Yesterday we had yet another
study day. But that was after, OT, Speech, Hippo (horse), and Music therapy. Music is just down the road from the hospital,
but Lily had to fast 4 hours prior that that appointment, so I asked her Speech Therapist to give her some applesauce at to hold her over until Poor girl. This
I am starting to think about
changing the name of study day to sh!tty day. I swear we can have this great day at therapies. Be feeling good and go to this
study crap and just feel awful.
We show up, park in a different
garage thinking I am smart knowing we have to see the neuro in a different building. Parking in the other garage causes us
to walk through the hospital, out and into the building on the side that is Dr. Offices. We show up. Wait over 15 minutes,
we are supposed to be taken right back. Get in the back, Lily is whining. Of course she is she is hungry. I thought we would
do blood first, but no. We do the ECG first. Then we do vitals, weight check. When I push Lily over to the scale this woman
who is there with her son, looks at Lily and asks me “How old is she?” I say “5.” And she looks at
her and then me and shakes her head slowly no and gives me sad eyes. I just looked at her and hard and walked away. Don’t
give me your pity. It was weird; it was awkward and totally rude. I could have easily said, “When is the last time you
brushed your teeth?” and slowly shook my head and looked at her with eyes filled with pity. But I would never do that.
That is rude.
So we go back to the office,
Study nurse said that we don’t have to see Lily’s neuro in the other building, we can see someone else. Damnit!
I parked all the way on the other side of the hospital, trying to be clever. Oh well, whatever. Get her in here soon. Lily
is freaking starving. A tall, beautiful black woman with an island accent came in. She was kind and met my eyes and spoke
TO Lily. I immediately liked her.
Study nurse is in a hurry
and rushes her. She says ok, do a quick physical. Dr. says, “Ok, wait a minute.” Gets out her tool box, or whatever
Dr.’s carry. Checks pupils, mumbles, seem concerned. She had never met Lily before. Measures her head. Study nurse says
“Cranial ok?” Dr. quietly says, “No.” I can’t understand what they are saying, but study nurse
says she wishes Lily’s neuro mentions this. She writes stuff down and then asks the Dr. “Would you say she is
severely mentally retarded?” Dr. says, “Only if mom says so.” I say, “I only allow that term on paper
I don’t think I could
ever describe the feeling I felt when I read that on her records one day.
I felt like the nurse was
in such a hurry that she didn’t take Lily’s feelings into effect. Like Lily wasn’t there. Or at least that
Lily couldn’t understand her, we don’t know what Lily understands, but I like to give her the benefit of the doubt
and not assume the worse. All of Lily’s therapists talk to Lily. Talk to me about Lily, while Lily is there and never
assumes she can’t understand. I was overly annoyed. So the final question was to me, “Do you think she is better,
same or worse than the beginning of this study?” I honestly say, “Worse.”
They say, “Well that
is honest”, I said “Yup”. She started a new seizure since this stupid study and I won’t answer what
they want to hear. The Dr. says, “Mom knows best”, signs something and is on her way. Then we are told to go to
We get there; they again
make us wait a good 10-15 minutes. The lady is training and she says, “These study kids are really hard, the wiggle,
they move and they don’t understand”. God, she was lucky I was nice and held Lily’s legs, I was so temped
to let Lily give her one hard kick to her stomach while she was sitting there drawing. Ugh. You would think in a medical setting
people would be so much more, understanding, kind even, maybe?
Finally we are done. I am
pissed, Lily is starving and we go outside and sit in the warm sun and I feed her a yogurt and Capri
Sun before our long hour ride home. Several people walk by, some smiling, and some just staring. We have to walk through the
hospital to get back to my car and I am comforted by the fact that everyone in the actual hospital is actually, nice. Ahhh…
an older southern Dr. sees me with my hands full and asks if he can help. I politely decline his offer, but feel energized
by his kindness. Walking through the hospital, Lily and I are like Mother Theresa and side kick. We get smiles, friendly eyes.
No mean stares, no judgments. NO PITY. I don’t get what the difference between hospital and outside hospital, but I
think I will always park on the other side of the office so we are forced to go through the hospital. It was the best thing
for me after that awful study visit.
And you know what else? I
was told I would get $35 per visit. I haven’t gotten a cent yet. We just completed our 7th visit. That is
$245. Hello….. would it hurt to make this a little comfortable for us? Oh yes? Oh ok.
I won’t end this on
a crabby note. I wanted to praise once again several organizations that put together “Special Day for Special Kids.”
We go every year and have a great time. Everything is free for families like us and it is a lot of fun. The girls had a great
time. Lily was in love with the Coyotes Howler, he sat next to her and she kept reaching out and touching him. Lily never
voluntarily touches ANYTHING. It was so cute.
I will try to upload some
pictures into my Flickr account when I have a minute or two.
I am thinking of moving this
site into a more blog friendly site. If I do, I will obviously have a link up and I won’t take this one down anytime
I’ll let you all know.
wanted to let you all know I am going to just put pictures up on my flickr account and will put a link up here. I am running
out of room and it is just too hard to pick and choose what to delete, keep and share. This way you can see all my favorite
to have a separate page now with the flickr link.
here is still just cherries and roses. :)
March 21, 2008
My apologies! It has been
a long time since I have updated!
Alright, let me try to catch
Lily started her two week
long spring break on the 10th. She had all her therapies on that Monday, then Tuesday the 11th we got
her AFO’s, SMO’s and SWASH brace. I will post the pictures. They are super cute! Leopard print, because she is
such a diva. She is pretty good with the SWASH brace. I thought she might hate it, but she really doesn’t. It is too
hard to explain so if you are curious just use that Google search you all know all too well and look it up. By Thursday of
last week Grandma Cheryl came from South Dakota for Andi’s birthday and
Andi got sick that night. She ran a high fever up until Wed. of this week. Poor thing. She was so sick during her birthday
party and actual birthday.
We had a good party. We shared
it with cousin Skylar and rented a jumpy thing and had a ton of people, Andi got a ton of gifts and passed out in my arms
around Poor thing, she was burning up by the end of the day. Sunday we just
relaxed at home most of the day and Monday she stayed home with Grandma while I ran Lily to therapies. Monday the 17th
was her actual birthday, she was ok in the beginning of the day, but then just started running a super high fever. I took
her to the Dr. who thought it’s the flu and she slept the rest of her birthday. By Wed. her fever was just low grade,
but still today she is under the weather, crabby and not a lot of fun. She stayed with Aunt Jenn since I didn’t want
her to go to daycare sick. She hasn’t been since last Tuesday the 11th and she was supposed to start Pre
School the week. Being the big three years old she is now.
Lily and I spent 6 hours
at the hospital on Tuesday for this study. Sigh. It is such a pain in my butt! She had to fast and have no meds before her
appointment. Then she had her blood drawn and an ECG. We had an hour break
and I fed her some applesauce and a banana. Then back up for another ECG and blood drawl. Then we had a two hour break to
get some lunch in a packed hospital cafeteria, pushing Lily and holding a tray trying thru a packed cafeteria and doing my
best to spend less than $4, which was all my cash I had, is tough. I went over $4 and luckily they took debit. Lily and I
ate and still had over an hour to wait.
We tried to go outside and
hang out where others were eating. There was this little girl who was staring at Lily like she had spinach in her teeth and
I started giving her dirty looks trying to get her to turn around and she just wasn’t budging. Then she started feeding
pigeons. I HATE birds! They were all over the place and swooping right over my head. I had a freak out moment, and pushed
Lily away. We went to the front of the hospital and sat for the rest of hour. It was beautiful outside and we enjoyed it.
Lily is so patient. So sweet.
I just look at her on days like that an almost envy her. She just goes with the flow. I just love her so much.
Then the poor thing had her
blood drawn once more and one more ECG.
All of that just to do it
again on April 1st. Every two weeks. This thing is so not worth my time.
Her drops are averaging about
15 a day. Plus the new little seizure that started. We have to see this thing through, since I committed to it and we are
helping other children. But after this we can go on open study and neuro can dose her as he sees fit. That will be in June.
If it is still not working I will then quit and start her back on Vigibritine, she has always done the best on that and I
hate seeing her have so many seizures. I miss Vigbitrine. I am not sure why we did this. Oh yeah it is b/c her neuro swore
this would help her, yet he didn’t mention the chance of her getting placebo, well until after we were all signed up.
If she isn’t on placebo we will be in shock. Low dose is the only other thing it could be. Whatever. I will stop complaining.
We wish you all a very happy
early Easter. Sure sneaked up on us didn’t it? Ours will be a little different this year. We are having a family get
together at the park Saturday morning and then church Saturday night. Sunday my mom, sister, aunt and I are going to see the
Broadway play The Color Purple. We totally didn’t plan this on, my mom got tickets, the best seats she could get were
on Sunday the 23rd and since Easter is never this early she didn’t think twice to book it that day. Well
then she saw it was Easter and called to exchange and they refused to exchange them, so that is why Easter is all crazy this
year. It is ok, we don’t have our old church to go to and it really isn’t the same. Now this year we will just
wake up, give the girls their baskets, and have them look for eggs. Then mommy will get some away time, which after Lily’s
long two week Spring Break and Andi being sick at home, a little break will be welcomed.
Have a good weekend.
So yesterday we got to spend
another couple hours at the neuro’s office for this study. This is far more work than I had ever anticipated. Especially
since we are pretty sure she is on placebo or low dose. Even neuro concurred, well speculated. No one knows what she is on,
it is a blind study. He said when the study is done we can try this med for real, but he strongly encouraged, read: begged,
us to stay on the study. We know we are helping other kids by doing this and that is my only motivation. We were told we are
to get $35 each visit, but that has yet to be seen. We had our 5th visit yesterday and this one included to dreaded
urine sample. I got it, it only took 2 hours of Lily sitting on the potty Monday night, but we got it. A blood draw that required
a 4 hour fast, which Lily was less than excited about, and I had Andi with us. After giving them her golden urine and they
took her blood Andi was so sweet with Lily. She was rubbing her face while she was crying. She was saying “Ahh Sissy,
its ok” and she wanted to hold Lily’s hand while we walked down the hallway and up the elevator, no matter who
had to side step to us, over to the Neuro’s office.
While in the office with
the Neuro, he doesn’t see her every visit but he had to on week 5, I tried to have a conversation with the poor bloody
bloke, but it was awfully hard. Lily farted continuously for, and I am not exaggerating, at least 5 minutes (not one long
one but one after the other). Really she did. Andi was getting very tired and she isn’t like those kids that get tired
and sit on their moms lap and suck their thumb, she, kind of well does the opposite. She wanted me to blow my nose and loud.
While I was trying to talk to the Dr. While Lily was farting continuously. She asked nicely once and I did it. I pretended
to blow my nose, but no, pretend is not acceptable. So here I am trying to carry a serious conversation about Lily’s
EEG and her seizures while Lily is farting and Andi is in my face saying, no screaming, BLOW YOUR NOSE MMMOOOOMMMMMMYYY!
The study nurse said, do
you hear anything Dr. _ has said and I said “yes and repeated exactly what he said” she looked surprised. Actually
she looked like all my teachers in H.S. that would pull that same crap on me. I can do three things and still hear you, ok.
Now give me back my M.A.S.H. paper! (Sorry that is really only for you gals who went to High School in the 90’s).
Anyway, we completed week
5, barley. In two weeks we will go in ALL day for week 6’s visit. This one will include 3 blood draws, 3 ECG’s
as well as other crap.
Sorry for complaining, it
is just on top of 4 therapies on Monday’s; Tuesdays are becoming a huge pain in the butt as well.
Oh well…. A couple
more months. A couple more months.
Good news! Lily finally gets
good AFO’s, SMO’s and her SWASH brace on Tuesday the 11th. I don’t even want to go into what
they said about her AFO’s she has right now. They said they cast her foot into a deformity. They don’t support
her properly and they are grossly a misfit. Makes me sad the quality, lack there of, care she got from the State services.
Anyway, new ones! And saucy
ones at that! Leopard print! Can’t wait!
Spring Break starts Monday
and so I will be spending a lot of time at home the next couple weeks. Lily has a 2.5 week break unlike most schools since
she is in a modified year round school year.
Our roll in shower is done.
It looks great. They did some half ass work on the other parts they said they would do, I think they took advantage of the
fact Andrew is in construction, but oh well. We got our nice shower and we are waiting for her roll in bath chair. Pretty
I can't believe Andi Jane
will be 3 in less than 2 weeks.... man......
Feb. 26th 2008:
Andrew's 26th Birthday! His golden birthday as I remind him. I can't believe he has almost caught up with me. A few more years
and he'll pass me up. :)
doing pretty well. She started a new type of seizure, I can't remember nor do I feel like looking at my last post to see if
I mentioned it before. She has a drop then a cluster of myoclonic (it looks like she has bolts of electricity going thru her,
then she is a little dazed and tired). Now these cannot be from her withdrawal from Vigabitrine, she has been off that since
the end of November. It can only be from either a new med (?) or too much sugar in the placebo, I am be facetious here. All
of her therapists, including the one I didn't tell, say something is different. Not hugely, but if I had to bet I would bet
Lil Bug is on a low dose of this mystery med. We had to increase it this week and I am nervous. I felt like she was just adjusting
to the new med and now we are adding to it, "or not" (finger quotes). I hear a high dose is wiping these kids out and I do
not want that. I'd rather her have drops. I'd rather go back to her just on Topamax to be honest, but we have gotten our self
into this thing, I will see it out a little while longer. I think I am just being negative b/c I am so sick and tired of driving
to Phoenix. It is so incredibly inconvenient. Traffic is horrible; they
are making a light rail system, great for the future, crappy for trying to get anywhere downtown. Plus with a new type of
seizure, that really chops my hide. (Did I just say chops my hide?)
just doing so well lately; I really think we will have her taking steps within the next year I hate to screw around with her.
I am done complaining.
next week I have to take her out of school and fast her, more blood work and another urine sample (!) ugh.... at least we
see neuro with this one and you better believe I will tell him about this new seizure. Sigh....
hippo therapy again on Monday and did much better than last week. She looks so peaceful and serene on the horse. I just love
that. She hates grooming though. She really hates it. She likes the horse ride though. She had 4 drops on her 30 minute ride
and was totally wiped out by the end. Yet after a quick lunch she was perky for her music therapist, so that was good.
doing well. She is overjoyed with the thought of her upcoming birthday party. She asks everyone to come and can't come up
with one theme so it will be a hobnob of themes. I think it is a fun idea. Spiderman (her request) plates, princesses jumpy
thing, hello kitty cake, etc....
Andrew was being stern with her and said something I can't remember, but she looked at him and said "whatever". Sigh.... we
have quite the future with her, don't we. Cute at 2, kick her in the butt at 12.
the update for now. I promise more on everything later.
February 20, 2008
Alright here is the latest
We aren’t noticing
much of a change in seizures. Lily is still having anywhere from 6-20 drop seizures in a day. Her appetite has decreased and
some times she seems a bit “off”, but other times she is alert and happy. I am pretty sure she is on a very low
dose. She could be on placebo still too. I can’t imagine it being a high or medium dose.
Monday was hectic (!) we
went to OT at 9am, and because speech cancelled due to illness we had an extra 30 minutes to run home and get Lily’s
back pack that I forgot and then we headed to the stables for hippo therapy. Lily did not love it like last time. She was
much more wobbly than usual, hence why we think she is on some medication. She was upset that she had to help groom Ruby before
she could ride her, because we all know Lily hates doing anything she doesn’t want to do. So after her wobbly, less
than happy horse ride I fed her quickly in the car and we headed on our 45 minute drive to Music therapy. There she had a
good time; she was happy and enjoyed group participation week. Then we went over to the hospital and she had to have her blood
drawn, they were quick, fast and Lily didn’t even think about crying. Then we had an hour to kill, I ran to return an
impulse buy at Old Navy and found my favorite Converse that I wore the crap out of at an outlet store and then we headed over
to Orthotic Specialists. This place was INCREDIBLE! It was founded by a husband wife team who really know their stuff. Barb
saw Lily and I had never had anyone take the time to look at her and see what she needs (ortho wise). She spent and hour with
her and had Lily walk. She said Lily walks really well considering and she wants to help her walk better. She put an s.w.a.s.h.
brace (google it) on Lily and although Lily wasn’t a huge fan of being constricted she walked amazing with it! It was
incredible and I am so excited we are getting one. It was amazing to see the difference. They said kids with CVI (cortical
visual impairment) can often see better when they aren’t concerned with keeping their body still and it is so true.
Lily was so pissed while they were casting her for her AFO’s and SMO’s and when the one came off and Barb put
the sock on her other foot to start casting that one Lily immediately looked right at that foot and at Barb. It was so spot
on, I was just amazed. I actually caught myself teary eyed twice there, no one has ever given Lily the time like Barb did.
I also have to say we have the most amazing, supportive PT and the company that she comes from. The owner of the therapy office
came out to help talk and figure out what all Lily needs because it was easier for her to come out than our PT. She was right
there with all the suggestions and directions. We met thru one of my dearest friend’s younger sister who is now a PT
and is working with this company. She hooked us up and I know that wasn’t a chance encounter. It is amazing all the
things that are being done because of these people. They first came out and said Lily can walk, she just needs the proper
equipment and the right people working with her. Well it is happening!
Not to mention as we speak
the girls bathroom is being changed into a handicapped accessible bathroom, they are making a roll in shower. It is so awesome;
they are making a ramp to the front door as well. It is pretty amazing to see so much happening just because two people came
into our lives that really care.
We should have the braces
by mid March. I made her AFO’s a leopard print. Lily is my diva, we must show the world. As if her pink wheelchair isn’t
I am just thrilled with everything
going on right now.
The study however seems to
be a huge pain in the butt, we have to go weekly for blood pressure check, blood every other week and ECG’s I think
almost monthly. We got her new packet of meds yesterday morning and it looks like there was no increase so we shouldn’t
see many changes. I was actually breathing a sigh of relief seeing no increase. I know her drops are frequent, but I am not
sure they are worse than the side effects of these drugs. It is ridiculous to put kids on medications like these. The side
effects are just insane: Nightmares, drowsy, sleeplessness, thoughts of suicide (!), speech problems, movement problems, not
to mention what they can do to your kidneys and liver and this one can also effect the heart, hence all the ECG’s and
blood pressure checks. Sigh…..
At least I know she is being
watched well, much better than with any other med. I know when Lily was taking ACTH we never did half the things other people
do on that. Lily should have had levels checked all the time. A nurse should have done it other than us. It is just ridiculous.
Oh well, at least we are in good hands now.
It helps that I am older
and more educated and not blind trusting as I used to.
Alright well I should pay
you all for reading this, I feel like I am in therapy.
I will continue to update
with this study and I can’t wait to show off our bathroom and new braces!
Feb. 15th 2008:
Just an update from the start of the trial drug.
Day 1: 2 pills AM 1 pill PM
16 Atonic seizures (drops)
No napping, not tired (at all!), restless during night.
Day 2: 2 pills AM 1 pill PM
No napping, not tired (at all!), restless during night.
Lily has never been a "great" sleeper, but she usually sleeps most the night. I am wondering if she is on placebo, or
if she is having the opposite reaction than we expected. Too early to tell. Her seizures always vary from day to day, so I
have no clue yet what to think.
They forgot to get a vial of blood on Tuesday so we have to go in on Monday and Tuesday next week... sigh....good
thing gas prices aren't outrageous right now.... [insert eyeroll]
I'll continue updating.
Oh Lily is going bowling for a field trip, that class has a lot of fun!
We started the study drug
officially this morning. I am worried she will get either the no dose or high dose, either way that wouldn’t be good.
She is averaging 15 drops a day, but this past weekend was horrible! She had well over 20 and she was having clusters of jerks.
It was just awful. She also started her crying spell that is only cured
by being outside. I hate to get frustrated with her, but nothing seems to be wrong with her. We go out in the morning, we
run around and get home by for Andi’s nap. I get Andi down around and sure enough Lily starts crying at .
Right when I am sitting down. I take her swinging outside, she is laughing, smiling, all is well. We go inside, the second
her butt hits her chair she screams. She did this Saturday, Sunday, Monday and Tuesday, she will be home with her nurse today
after school so I will find out if she did it again today or if school cures her. I don’t know if she is bored, but
I can’t constantly entertain her. She isn’t interested in TV, but she loves to be outside. Man, she is a turkey.
I would think it was the increase of seizures bothering her, but I don’t think being outside would make such a change.
Anyway, I don’t want
her to be on no dose for obvious reasons; we have been waiting to start this drug forever, but I am afraid of a high dose
as well. That could make her really tired.
I just figured out that she
hasn’t started a new drug since April of 05. That is a long time, so it is pretty much guaranteed she will be affected
by this drug that is of course if she got the drug and not the placebo. We will see. I am interested to hear about her day
You know it just seems so
unfair, if you want some seizure control you have to deal with often intense side effects. Ok Lily you won’t have drops
anymore, but you will want to sleep all day. That just sucks.
Yesterday we had a long day
to officially start the study. We had to go to St. Joe’s in Phoenix. Her
day started with weight and height check, blood pressure, blood draws and an ECG. Then they asked for her urine sample and
I had to explain that I don’t have one. I spent the previous night with her on the potty training potty and she never
went. Then that morning we sat for an hour and she never went. They asked me to take her to the potty while we waited the
30 minutes between ECG and we sat and sat and sat and she never peed. She sure got pissed (pun not intended) and started screaming
at me about it. That was when I said, forget it! We did the 2nd ECG and then had a two hour break, they gave me
a bag to put on her and we went to lunch. I guess I didn’t do it right and she peed all over and around it. I finally
said I give up and will just have to bring it in on Thursday, another long drive to Phoenix
to drop off some pee, ugh. Then we did the 3rd ECG and the machine malfunctioned. It was just one of those days.
We got home around and she started wailing. I was beyond tired and frustrated.
I’m sure she wasn’t thrilled with me either. Luckily our nurse came and put her on the swing and took her for
a walk for me. It was a nice break.
Lily started Hippo Therapy
last Wed. night and she did AWESOME! Like amazing! I was so proud! I will update with pictures. She was so cute! Only problem
is we can’t keep our day and time, which was perfect. We are going to try to go Mondays at
which is when her PT usually comes to our home, and PT will meet us there. She will also get PT on Wed. at home at .
Here is what our Mondays
will now look like:
drive to OT/ST
Drop Lily off for OT and Speech.
Drive to Stable
11am-11:50 Hippo Therapy
Drive to Music Therapy
This Monday (18th) we also
have an appointment with the place Shriner’s hooked us up with to get her new braces which is right next to Music therapy,
but not until 4pm. Sigh… long day.
We were going to squeeze in a trip to St.
Joe’s to do our weekly follow up that goes along with this study, but we can’t since the study nurse won’t
be there, home with her kids, it is a holiday (for some, I guess). That means we have to go up there again Tuesday, then I
have to drop her off at school afterwards. That means I have to drive 45 minutes from home to the hospital, 45 min back to
her school and then 30 minutes to work. Sigh.
At least the next week I can swing
by after Music therapy. This study is going to be A LOT of work.
If it is placebo I just may have to
Feb. 5th 2008:
a very long 24 hours we are back from SLC, UT.
was awesome! The Dr. was so nice! They took x-rays, they said Lily's spine has a slight curve, but they don't want to do a
brace just yet. They think with therapy (esp horse) she will straighten herself right up. Her hips look great and now we will
be able to get new AFO's and SMO's at a place here. Whatever insurance won't cover they will. So much nicer than our clinic
here, I won't trash talk. I will just say Shriner's is lovely.
she is due for a new chair and the only way she can get the appropriate chair for her needs as well as ours is to do it thru
them. It is a week long process, but most certainly worth it! They are scheduled about 3 months out, so we will be able to
go back to Utah when it isn't snowing the whole time. Although it was pretty,
I like the sun.
was pretty rough considering it was Super Bowl weekend and as you all know SB was here in AZ. Our flight was delayed 2 hours
getting home yesterday, but we didn't know that until after they pre boarded us and put Lily's wheelchair under the plane.
We were stuck. Ugh.
it home though, Andi had fun with her cousins and Aunt Jenn and Uncle Kevin.
be starting hippotherapy tomorrow, but after a huge down pour yesterday I am doubtful. But at least we still get PT 2x a week
now; PT comes to our home if hippo is cancelled. Lily has forever needed PT 2x a week, but never had a therapist recommend
it, nor try to.
wait to get these new braces!!
the short update I will post more later!
were supposed to start hippo therapy (horse) tonight, but due to a rain filled Sunday we can't. It is ok, it is pretty chilly
today and I can only imagine how cold it will be when the sun goes down. I know you all probably offer me no sympathy saying
50 degrees is cold, but dangit, it is cold to me! We should start next Wed. God willing.
Sunday (Super Bowl Sunday) to go to SLC, UT. Our apt. is Monday the 4th at . I will update when we get back with the suggestions they give us.
is fingers crossed healthy over here. And Lily is having an average of 12-15 drop seizures a day. We have to keep track, it
is hard though when she is with 4 different therapists on Monday and at school all day and with her nurse in the evening.
That is a lot of people in on the counting. February should be a busy month, Shriner's, new study drug, and I think 3 field
trips! Fun stuff! Well some of it is.
night we sat front center row at Disney on Ice.
her princess dress and was mesmerized! Lily loved the colors and the music. She was just staring! It was so cute. Andi said
later that night that she wants to be a princess on skates and
have people clap for her. Funny girl. Andrew said he will take her ice skating when Lily has her hippo therapy. It is only
fair for Andi to do something fun in the meantime.
continue to keep you all updated with our happenings.
all doing well. Lily had a fun field trip that Grandma Cheryl got to join us on. We went on a wheelchair accessible hike on
SouthMountain. It was a good time, Lily LOVED it! She was giggling, yelling and laughing. She even went for a walk with her teacher
(actual walking, not being pushed) and they found a rock that Lily was holding and wouldn't let go. I never knew about the
wheelchair path and decided our family will do that a few times before summer shines its evil face here. Andi even walked
half of it. Andi is the child that if there was an option to have her surgical sewn to my side she would opt for it in a heartbeat.
Any walking on her behalf is a huge stride.
Cheryl came Wed. the 16th and was supposed to go home this past Wed. the 23rd, but we talked her into staying until Sat.
She is such a great help and we know she has to go back to freezing weather, so we are trying to stall it for her. I don't
think we can stretch it much further, Grandpa Steve is missing her! She came to help Andrew while I went away to a women's
conference in KY for a long weekend. We had a nice time. It was nice to get a break.
still doing well, she of course still has a runny nose, but otherwise she is good. She had a big grand mal last Tues. night,
but none since. She is averaging about 10-15 drops a day. I can't wait to try this new med. Well I pray she gets to start
it and I am not giving her a sugar pill for the next 18 weeks. Sigh...
had two fevers, one from Tues-Fri then it went away and was back Monday night. I took her to the Dr. Tuesday and he said nothing
looked wrong, but if she doesn't get better she needs a chest x-ray. But she is better. She is still coughing, but I am pretty
sure she doesn't need an x-ray. Her fever finally left for good early Wed. AM, she woke up in a bad sweat. You know tis the
season for getting sick. We can deal with colds; I just hope that is all that comes in our house this season. The last thing
I want is to put Andi in that bank tube thing to get an x-ray. I remember Lily just a baby and putting her in that thing
and she was screaming and I was trying not to cry... ugh. I really don't want to do that again.
be going to SalkLakeFeb. 3 and see Shriner's on the 4th and back home on the 4th. I
scheduled that flight having no idea it was Super Bowl Sunday, right in the middle of the game. Andrew is thrilled with me...
oops! No party for us. I'm sure we could go to a bar in SaltLake, right? Oh probably not. Oh well, there is always next year.
Andi is staying with my sister's family that night; it is much easier that way.
be going in to officially start the study Feb. 12th.
keep you all updated!
January 11, 2008:
So we went to start the study today for Lily. She will be involved in an 18 week study with a new med trying to get FDA
approved. She is in this study b/c it targets her type of seizures.
It was a long morning, it did start blessed by the hospital coffee cart being empty when I walked up (with only 5 minutes
left to my apt.) and I left the cart with a line of about 10 behind me. Coffee God knew this day needed that jump start.
We went right back at 9:30am, Andrew, Lily and myself sat in a conference room with our very New Yorker study nurse whom
was a sweetheart. She wanted to make this as easy on us as possible, knowing it is a huge commitment and we all need to work
together. We signed in blood our consent and Lily had to have her blood taken. While RN and Andrew took Lily to the lab I
was left in this large conference room to myself to fill in the sheet about all the AED's Lily has taken and the approx.
time she took them. Ok, there were 24 meds on this sheet, Lily had taken 16 of them! 16! Lily is 5. And Lily was on the same
two for almost two years. That means in three years we went thru 16 meds before finding the right fit. My mind was a blurr.
I was thinking well first hospitalization she had phenobarbital, of course I knew that one. But then on her third hospitalization
at 8 weeks we added Depakote as well as Zonegran. Then I was a blur up until I knew when she was 13 months old and was diagnosed
with Infantile Spasms (a total blow) and was on ACTH, daily injections given by her old maw. AWFUL time! Then blur again.
I knew we started something new when Lily was (the most beautiful) a flower girl for my friends wedding and that was Sept.
04, then blur... this was what my mind was going thru. I knew she was on the meds, but timing, please. Do they know what I
was going thru at that time? My brain was on overdrive. I was insane. So I just threw some dates down while they were gone
and was sat looking at my paper in a big conference room, alone. I started thinking. This looks like my conference room at
work, only thing is at my work we talk about painting houses and here they talk about saving lives. Same table, just much
Finally when everyone came back to the room and saved me from my own brain and self wallowing, we got an EKG done on
Lily, not a fan of cold things on her chest, let me tell you. She was 45.5" tall and 46 lbs. Her blood pressure was great
and daddy and her left. He took her to school and he went back to work. I then had to go to the actual hospital (we were in
the next building) and look at tapes from the EMU (epilepsy monitoring unit) with her neuro. The video was done this past
June and I was most traumatized by the fact my hair was so long and pretty. Why did I ever cut it? I also was embarrassed
by my low pants and my tramp stamp just flashing on TV. Lily's seizures were very mild there, I showed him the seizures, he
agreed they were and my job this month is to count how many times a day her head drops. That is all she does, which
is a miracle coming from where we were, but they are hard to control. One spot on the video I am dead asleep as well as Lily
and the light comes on, it is about 11pm and I look like I am so freaked out and can't see, I was really trying to stifle
my laugh watching it and I thanked God Andrew still wasn't there, I know he wouldn't have been able to stifle it. It
was hilarious. I was all sketched out.
Anyway, they gave me my journal and sent me out into the world. Monday she has an hour long EEG and then Feb. 12th we
start the meds. But we have no idea what we are starting. We may start high dose, medium dose, low dose, or no dose sugar
pill. I am pretty sure I will know what type of dose she is on. I am praying for low/medium dose. He said one out of four
we will have sugar. I said well then count us in. Our odds are usually good that something we don't want to happen will happen.
Don't take us to Vegas. This will be an 18 week adventure. I will share with you all that happens while it happens.
Gotta love our handsome Chinese Neuro, who grew up in London and trained in Australia. His voice is like drinking lemonade
when you think you are drinking water. I love how every visit he says to me, "if you can't trust your child's neurologist,
who can you trust".
I also think I was meant to work in the hospital. I don't know if TV glamorizes it, or what, but every time I am
there, I want to stay. I want to wear scrubs. I want to drink coffee there. I want to eat there. That is where I was supposed
to be. Maybe my 30's will be school and a new career???? What do you all think? Nurse Kim? I should have enough pre-req's
being Lily's mom.
So we got
sidelined from our apt. on Tues. Good thing I am annoying or we would have showed up and had to go back home. It was a scheduling
conflict and our apt. is now Friday . Lily will have an EKG,
blood work and urine sample done. Andrew and I will sign in blood our consent for this thing and Monday afternoon after
4 therapies she will have an EEG. Poor thing will be wiped out, which is good, she should sleep some of the test anyway. I
know if I had 4 therapies and then had an EEG, it would say I was brain dead.
I am happy
it is in the afternoon since that is when she cries. She is still doing it, but we seem to be able to get her out of her fits
with food or busying her. Her first day back to school was yesterday and she did cry for them, but she got rocked in the rocking
chair and calmed down. I joked on Lily's note that goes back and forth that they should be prepared for more cries if she
knows she gets to get rocked in a rocking chair. That kid eats up cuddles like our puppy eats up my shoes! She will do anything to get them, hence why we think her cries are self motivation for bigger
and better things other than her rocker. Oh our princess girl.
waiting for the study to start, and our afternoons of crying, not much else is going on.
walk the 1/2 marathon this Sunday, I appreciate the support I got for the walk! I haven't been walking more than 2 miles a
walk, but hell, I've walked the mall for 3 hours. I'll be fine. I did have a cast change. My dear friend Kim doesn't feel
up for the challenge so I am swapping her for my sister. She hasn't walked much either, but she works out daily. She'll be
I am going to Kentucky with my mom, sister and aunt to a women's conference for our
denomination. Well the denomination of the church that I used to go to before they closed their doors. Anyway, should be fun.
We will be there until Monday. I haven't been away from the girls in over a year, except when Grandma took them to Greer this
summer. I am looking forward to the break. My boobs won't hurt this trip like NYC!!! LOL (I was nursing when I went last time
for anyone new to this site)
Andi is doing good. She protests naps at daycare making her quite challenging in the early evenings. I am really having a
hard time with this. I ask her what she does when everyone else is napping and she said she goes to the office. I asked her
if she was in trouble and she said, no I color in there. Sigh, looks like she is rewarded for her bad behavior. Not like I
blame them, she is awfully cute. Just not at with no nap.
She surprises me daily with things she says. I am usually shocked and end up laughing. I didn't think it was cute when she
told me she was going to beat me up though. Sigh....
update more when I know more.
Starting Wed nights at at a stable near by! YEAH!! I can't wait for this!
We go Feb. 4th, we are flying in Feb. 3rd and home that next day after the apt. I do have a paypal button if anyone is interested
in helping with the hotel and rental car. It will put us out a few hundred dollars, but I am really looking forward to seeing
what they say and seeing what they can do for us! Their goal is to get kids walking and it would be amazing to see that one
day for our Lily girl!
Am I really
writing 2008? When did I start this website? 2003? 2004? Wow!!!
has been an interesting a long end to 2007. I will say 2007 was a great year for all of us. It was especially the best year
Lily has ever had. She has grown and changed so much! Her seizures have been the most controlled ever.
she will be seen by Shriner's in Utah and she will start hippotherapy (horse). Should be great for
also start this new med on this study soon!
a stressful last few days though. Lily started crying on Sunday for a period of over an hour. I left to see a movie and Andrew
gave her a klonopin since she wouldn't stop and he thought she was having excessive myoclonics. She slept til the next day.
She was fine all morning. We had some errands to run and everything was great. Then we went home, got Andi to sleep and I
was going to lay down and all of a sudden Lily just started crying. I rocked her in the chair and she stopped crying. Then
I had to get the laundry, put her in her rocker and she just cried and cried and cried. I picked her back up, but there was
no stopping her. I put her on the floor. I put her in Andi's bed, furthest room from ours which was where Andi was sleeping
and I did NOT want her woken up! Nothing helped Lily. I gave her Motrin. I lay with her. I smoothed her hair. I talked to
her. Nothing helped. We went to my moms for a New Years Eve party and she was fine. She slept on Grandpas lap and she slept
in my parent’s room the whole night. No problems. So we stayed until . Andi had a late nap and had a blast at the party. It was really fun.
day everything started out fine again, breakfast, quick trip to the mall and home for naps. Well Andi goes down, Andrew goes
down and I was cleaning around the house and it all started again. She cried and cried and cried. She was ok in the rocking
chair with me so I thought, she is ok. I put her down and she cried and cried. No stopping her. I decided to take her for
a walk and she was happy. The entire walk, she was happy. We go home, the minute we walk thru the door, more tears. No lie.
So we go for another walk. I need to get moving for my 1/2 marathon next Sunday anyway. We get home. Cries! Seriously! Seriously?
I was getting frustrated. I was tired. So I thought we'll go to the grocery store. She was fine in the car. Then we stop to
get gas and she cries. She is fine walking thru the store. We go home, get Andi and go to my sisters for dinner. She cries
the whole way there. She cries the whole time at their house. I finally decide to take her to Urgent Care which was deserted,
she got in right away. Checked her ears, checked her throat. Everything’s fine. She does have a cold, but she never
acts like this with a cold. They decide to check her urine and we wait an hour for her to pee. Finally I request they use
that cath thing and that sure made her pee. Her pee was fine. Sigh... they sent us home with no ideas. They said next time
take her to the ER though, since they have limited testing there. She is home with the nurse, I have to send payroll today
so I had to work. I will see how she does today and take her in tomorrow if this all keeps up. So frustrating when she can't
tell us what is wrong.
I am hoping
she is just sad that she has a cold and being on only one med maybe she really is feeling the full effects of the cold. Who
knows? Keep her in your thoughts and prayers. Let's hope this isn't an omen for 08 and this will pass and 08 will be healthy!
have been a little frustrated from time to time taking Lily off Vigabitrine, but all in all she is doing well.
our Christmas in the White Mountains, Greer,
AZ and we all experienced our first true white Christmas. My
mom being native Arizonian and my dad living here since he was 13, after coming from South America it was a first for them as well. I guess a first for everyone except Andrew who was desperately
missing his old South Dakota white Christmas'.
Lily nor Andi slept well up there so we were all overly exhausted and I could not wait to get home and sleep in my own bed
last night. That is me, and Andrew, and Andi and the new puppy, Fiona
we got. Sigh....
a lot last night and I finally had to give her some klonopin to get her to relax. She is not a crier so of course she had
me worried. She has been off Vigabitrine for 4 weeks come Saturday so it should be out of her system. She could possibly be
getting her 6 year molars by the way she is drooling and munching on her fingers, but I don't feel much, although if I spend
more than a second exploring I about loose my fingers so I try to put my fingers in her mouth as little as possible!
I do have
to say I am pretty happy with the results of the wean. I can't believe that Lily is only on one med right now. She hasn't
been on one med since this whole rollercoaster started over 5 years ago. She is so alert and "awake". She rarely even naps
much anymore; she has always been a napper. She never napped on our 4 hour car ride, there or back! Crazy kid and the puppy wanted to sleep on her lap the whole way. I don't blame her though, Andi is a bit rough.
We go in
Jan. the 8th to start everything for the study. That appointment is just for us, Andrew and me to fill out paperwork and such.
Then hopefully the 10th she will have all her testing done that day. EEG, EKG, Blood work, etc. Then we have to journal her
seizures for an entire month. Am I repeating myself? I think I have already said all this.
we are getting closer to starting this study. Although I hate adding a new med, I know it is necessary. Lily has huge drops
and jerks. I mean, I can't imagine what it feels like for her. It is like a huge electric shock thru her body and it happens
often. That is why I am saying I have mix feelings about the wean. I am glad she has had few grand mals, but it is upsetting
how big her atonics and myoclonics are. Poor bug. Life is never easy, but I can say this is the easiest it has been in 5 years.
a huge swing for her to play on outside. Daddy just has to build the swing set and now with a bum shoulder from snowboarding,
I am hoping she will get to play with it by spring. It's too cold to play outside right now anyway; it is barely 50 degrees
today! That is cold! Well, it is for us!
you all had a very Merry Christmas and will have a happy New Year.
spoiled and got a new camera for Christmas. I can't wait to share all the pictures I took this Christmas.
So we have
been crossing our fingers and all has been well with Lily. She is still a little overly emotional, but she is down to one
med. She is probably feeling things she has never felt before. It is pretty exciting!
still recovering from a cold and her nose has been running since October, I swear it to be true. I think she must just have
a cold from October til May. Sucks for all of us who care for her, but of course I am sure she really doesn't enjoy it too
some fabulous pictures takes this past weekend. Even though it was sprinkling with no sun, they look amazing! Andi was a stinker
so we don't have many of her or with her, but Lily got some great ones as well as our family.
ride was pretty fun. A little too long, but fun. It rained the whole time. Man, this is one of the first Decembers it has
really felt like Christmas is a coming in a long time!
I do want
to ask for prayers for a family friend. I am not disclosing her name, but someone close to us was recently diagnosed with
breast cancer. It is heartbreaking to see this happen to someone so young, so kind and so caring. I pray she caught it soon
enough and will make a full recovery, but keep her in your prayers please.
for Lily. I think she might be just fine off this med, but I am still holding my breath. So far so good though; this
study may really be a good thing, if it ever comes around. There seems to be a lot of waiting.
last couple weeks leading up to Christmas. Remember what Christmas is all about and try not to stress too much. You'll get
your gifts. Your baking will be finished. Your holiday parties will be fun. Enjoy your families. Let them know what they mean
to you. They are what is important now and always.
has been off the Vigabitrine for one week tomorrow. All was going great! She has been incredibly alert, happy, visually attending,
just doing great. She was however having a lot more myoclonics and atoncs (jerks and drops for those of us who haven't spent
the last 12 years in medical training).Then last night, well early this morning I was awake due to being woken up by a crying/coughing
Andi at 2:30am and unable to go back to sleep, I heard a noise coming from Lily's room at 5am. I went in thinking she was
just up, but she was in a full blown tonic/clonic seizure. It went on for what seemed forever and it's frustrating since I
just saw one for these a little over two weeks ago. She was sleepy this morning, but was in good spirits by the time I got
her on the bus. I haven't had any calls from school so I am assuming her day went well.
spoke with the study nurse she said she has to be off a med for 4 weeks before you can start a study. Then we have to do EEG,
EKG, Blood work, etc and a 4 week diary on her seizures, then start the study, but since it is a study in February she will
start with placebo and sugar pills so she won't even start the med (I will keep it unnamed for the sake of studies whom are
anon) until close to March! So I have decided that if I see many more of those puppies the study is out of the question. It
does suck though, since the study is to help her jerks and drops. I can't imagine what life would be like not worrying Lily
is going to break her nose or teeth with a drop seizure BUT I cannot and WILL NOT go back to her having daily tonic/clonics,
no way. NO WAY. She is doing too great right now, she is developing, trying
to walk, trying to move around, and touch things. We will soon be starting Hippotherapy (Horse) after the holidays; we can't
start worrying about the big grand mals. Ugh, have I mentioned my despise for seizures? A few times I am sure.
we get to go on Lily's bus around town and look at lights. We did it last year and had a great time! Andi is super stoked
b/c she always wants to go on "Sissy's" bus every morning. She finally gets to! Plus I am a huge cornball at Christmas time,
I love the music and looking at lights!
luck, maybe she is having withdrawal seizures and those will fade with time. Otherwise if the seizures are b/c she needs Vigabitrine,
then we are out of luck.
November 27th 2007:
So we had a wonderful Thanksgiving! Nice and freezing cold! :)
We flew to Denver and drove north to Windsor, CO. We were visiting Andrew's brother and wife, Jeremy and Andrea. They
were amazing hosts! They finished their basement and it was full of fun things, a theater, a pool table, a bar, and a room
for us! I got to be the first person to shower in their new bathroom! How about that for a fresh shower! :)
It snowed the first night and we woke up to about 6" of snow. It was beautiful, but cold! I was in a bit of a shock,
coming from AZ who was having a huge heat wave. A record in heat this season. We got to spend a day with Jeremy and Ann all
to ourselves and we really had a great time! The second day Andrew's other brother and wife (Josh and Carrie) and their kids
came along with Andrew's parents and Grandma on his dad's side. It was a full house, but so nice for us all to together. It
is far and few between now when we all can spend time together. It was so fun to see Andi and Lily with their cousins Ayden
and Avery. Ayden is 4 and Avery is 17 months. They are as cute as buttons and a lot of fun.
Andi wanted to be outside the entire time, but unfortuantely for her, her mom has no idea what winter really is and she
was packed poorly for snow play. Jeremy and Andrea really put themselves out for all of us. They had each meal planned for
and they were all wonderful. Thanksgiving was awesome! Perfect! Since I am not much help in the cooking department I put myself
on dishes duty and tried my best to be helpful and out of the way.
The girls were really good! Except for spilled chocolate milk on the new carpet, they were on their best behavior. Andi
had some issues with the fact we got Avery a doll and stroller for her Xmas gift from us, she thought it was hers, but it
wasn't too bad. She called the baby Avery's baby and was ok with handing her over once our vacation was over.
Lily did end up having a big seizure the first night which happened to be the day I increased the wean and stopped her
lunch dose of Vigabitrine. But due to the fact we were traveling, the elevation was way higher than we are used to and we
did a wean that day I couldn't just assume it was the wean. I did decide to put her dose back up and give her that lunch dose
each day we were there and she was fine. I started the wean again on Sunday, yesterday, and so far so good. I am still
holding my breath though. I am so not sure this wean is a good idea. That is why I am going waaaaay slower than the Neuro
We left at 6:30am on Tuesday and got home at 9pm on Friday. It was a good trip, the airports weren't bad traveling those
days and we had a great time getting together with the whole family. We really miss spending time with everyone. I know
it is hard on Andrew not seeing his family more often, but it's nice to know that when we do it is a great time!
I have some cute pictures I will post tonight as well.
I am going to do another wean later this week. I will keep you all updated.
Oh and we think we have found a church. We have been checking out The Grove Bible Church just 7 min from home and
we all are enjoying it. It isn't Tri City, but it is seeming like it may be our home for awhile. Or maybe longer.....
November 13th 2007:
Check out the home page and see a video of Lily taking (very assisted) steps with her PT Michelle. Quality isn't great,
but she is doing good. Getting stronger every day!
So far so good on the wean, she is very happy and I even got her to laugh hard for me at lunch on Sat. if I can get that
uploaded from my cell here I will. I am going slower than the Dr. said, after all we have already visited the ER in Colorado
last time we went, I would prefer not to have to again. We leave a week from today and finally get to see this fall weather
everyone keeps talking about it!
November 10th, 2007:
My baby niece is 17 today. That ages a person.
So we saw neuro on Wednesday and he wants some changes. I am nervous, but I agreed to a wean of Vigabitrine. He wants
her in a study that is specifically for drop seizures. He said this medication really works, but she can't be on Vigabitrine
during the study. Vigabitrine is the med that the day we started it was the end to her grand mals. I am obviously hesitant
for this wean, but am willing to see where she is with out it. Lily has been on it almost 3 years and if she were seziure
free at 2 years we would have discussed the wean then, but she has the drops. I can say I am going slower than her neuro recommended
and so far so good. She is taking 500 mg less a day and so far all I have seen is awesomness.
Yesterday we went on a field trip to Bounce U. A place, with... bouncy things and it was a blast. They let me bring Andi
and the girls just had a fabulous time. It was so cute! Lily went down the slide with Ms. Amy and myself several times. Andi
went down all by herself the entire time. She didn't want to leave. Lily ate pizza and rootbeer and loved it all. When she
made it home she was in great spirits and laughing and smiling. I don't know if that was just a random day or her coming out
of a haze? She was on a very large dose.
I am going to drop her 250 mg more today for several days before I drop her some more. I am all for being conservative
when it comes to a med wean, and especially if grand mals are involved.
I have already strongly stated, game off if those come back. My greatest fear is messing with them and they come back
and the Vigabitrine doesn't help this time. Seizures are tricky and they SUCK! I don't want to mess with this at all. But
then again, drops are out of control and if we stop those we can have a more realistic dream of her walking one day. Right
now, even with the ability it wouldn't be safe.
Keep us in your prayers as we do this wean. I am nervous. Down right sick to my stomach. I don't want to go back to that
dark place back when we had no control, and no hope. Those days are past us and I really don't know how I would handle if
they reared their ugly face.
has come and gone and now it is time for Thanksgiving. I can't believe it!
a nice Halloween. We went to my friend’s neighborhood to Trick or Treat at and I am glad we did. It was so kid friendly
and so many people went out of their way to make their homes look spooky, it was a great time! It was the first year Andi
kinda "got it" and it made it more fun. Unfortunately she has decided now that naps are for babies and she makes the early
evenings pretty miserable on everyone. She included. She needs to be asleep by or else it is tough luck Charlie. Sigh... I really don't think a 2.5 yr old should be nap
free. Ever since I weaned her naps have been so hard.... if I could do it all over again.... oh well... So during Trick or
Treating Andi wanted to be held almost the entire walk, she just went to the door and her and her best friend Joey said something
that sounded a whole lot more like "Christmas Treat!" than Trick or Treat. Andi carried Lily's bag and I think Lily got twice
as much as Andi did. That wheelchair comes in handy sometimes ;)
three costumes this year. It started with Lily's old Tinkerbelle which was purchased from the Disney store, it was originally
$60, and it was in perfect condition. Very cute! Then Andi said no Tinkerbelle, I want to be Ariel. She was very insistent
on being Ariel and Andrew felt she is old enough to decide on her own. So I go online, find a decent priced Ariel and get
it. THEN she is going on and on about Cinderella. I know I should have just told her no, but I looked on Ebay, seen one for
$5, bid only $5 and won, so we were stuck with three costumes. Ariel came in and was huge! So huge it fit Lily, but we had
already decided Lily would be a black cat. We were planning on just pinning Ariel a bit to fit Andi. So to make use of
all the costumes we go to a dress up party on Sat. night and I make Andi be Cinderella, it is easy and the cheapest.
Then she wanted to wear Tinkerbelle to daycare on Halloween. I had her all dressed up. Make up, hair done and then she decides
she needs a belt and socks... [insert eye roll] Well after 10 min in Tink, she decides to wear Cinderella to daycare, better
anyway with being potty trained. So she gets home from daycare and gets into Ariel and sees Lily's black cat stuff and says
she wants to be the cat. I figure Lily can fit into Ariel better anyway, and Lily hates her face drawn on so Andi was a black
cat. That is 4 costume changes people, I guess we are just getting her ready for Broadway. Lily was sweet as Ariel. She was
so hyper after our long walk trick or treating it was almost impossible to get her to settle down to go to sleep. She was
grrring and rolling all over the living room. I finally put her in her bed and just turned off her lights. She is so cute
when she is all wound up!
I got our
application in for Schriners to evaluate her. They said it can take up to three weeks before I hear from them to see if she
qualifies for an eval. I am pretty sure she will. These people I hear get kids up and walking. PT says Lily needs different
braces for walking, that her AFO's are too restrictive. I know Schriners will put us in the right direction.
I had a
hard time last weekend b/c we had two parties to go with and my first instinct was to not bring Lily. That bringing her would
be too much work and afterwards I was very upset and disappointed in myself for even thinking that. I hate how difficult it
can make things bringing Lily, but I hate to even think that I think she is a burden. I never, ever want her to feel I think
that and this past weekend I really let myself down. I did bring her along with Andrew for extra assistance. We had a great
time. I just felt sad over all about my feelings. Sometimes it is overwhelming thinking about where can I change her diaper,
it isn't like she fits on those baby changers anymore. I have to find the right foods for her, make sure her meds are with
us for every meal. Getting her in and out of her chair, getting her chair into the car. Those are just things that go along
with Lily. I never want to sit and wallow and feel sorry for myself, I don't want anyone else's pity as well... I just get
frustrated sometimes at the hand we were dealt.
I got over
it though. I am over it now. We had a great rest of the weekend and Halloween was great. I guess though from time to time
I am going to cry and complain and I will once again have to get over it. Being a parent is tough work, and it will continue
to get harder and harder, but I signed up for this and I am in it to do my best.
October 26th 2007:
Look at the pretty girl! This is Lily's school picture, isn't it cute?! I thought we'd have to do retakes but I like
this. This is Lily is her truest form. Pretty girl!
Everything is going well. Lily had a little cold, but she fought back hard and it was the shortest one she's had. We
stopped milk with her and she seems to have a much less runny nose. She is happy and doing great!
Andi I have forgotten to mention has been for the most part potty trained for about three weeks now! She still needs
a pull up at night, but otherwise she is in panties. Yeah, saving some money now! Andrew and I took her to the State Fair
yesterday while Bug was in school (it is still too hot to take Lily out all day) and Andi rode on rides all by herself. It
was very cute to see her so grown up. Just last year she was so small and baby like. This year she was in panties and riding
rides all by herself. So cute!
This weekend will be my first in a long time without having to work, or be somewhere in the morning. We are going to
organize the house and get rid of a lot of crap! Then we have a pumpkin carving party to go to and a birthday party after
that in the evening. Then we are trying out a new church on Sunday. We will see how we like it.
So that is what is happening right now. Oh the girls costumes will be:
Lily: A Black Cat (comfortable and cute for her)
Andi: Ariel (she was going to be Tinkerbell (Lily's old costume) but she really wants to be Ariel)
I will post pictures, promise.
fall break from Oct. 1st to Oct. 17th. We went to San Diego
with a family we are friends with and split a beach house for a long weekend. It was wonderful! So wonderful we extended a
day! Weather was great, kids were great, and it was a wonderful time!
obviously all the new pictures I added.
went to a farm for their pumpkin festival during our break which was fun. I will upload those pictures as well.
got a new PT and she seems great! The new PT and the head PT of the company (organizer) came to see her this past Monday and
were so encouraging!
Lily will most certainly walk! Woo Hoo! That she even could have the strength to crawl! Woo Hoo! They are getting us an apt.
with a Schriners Clinic here in AZ. They say that Schriners gets kids walking that no one ever thinks could.
believes she could get Lily an extra hour a week for PT and we start Hippo therapy (Horse) at a nearby stable in the winter
months with our PT.
ALSO got us a number to get the state aide (DDD) dept. for remodeling our bathroom, on the state. We can get a tiled roll
in shower for Lily and I no longer have to break my back getting her in and out of the tub. She is getting so heavy and refuses
to sit in the tub so I pull her out 45lbs + wet and lying down. It's tough.
doing well. The only seizures we are still dealing with are the drops and I figure we will for the rest of her life. They
are so hard to control, they really frustrate her and I hate that.
to be having night terrors every few nights. Last night was one. She just screams bloody murder and you can't calm her. She
sounds so scared and I have no idea what to do for her. I try calming her, rubbing her, giving her drinks, but she just freaks
out until she falls back to sleep. Poor bug.
doing great. She talks so much; she has a very large vocabulary. I hate to say she is smart since every parent of a toddler
says so, but I am so often surprised by the things that come out of her mouth. Things I think should come out of a 4 year
at our store came in a Grandma and Granddaughter. The little girl was very friendly and I started talking to her. She had
hair the same color as Lily and blue eyes just like Lily. She was also 5 years old and in Kindergarten. As I was talking to
her I was so impressed by her mannerisms and self assuredness. She was so beautiful and I couldn't help but think for one
second I was talking to Lily. What Lily would look like and sound like if she were given a brain that worked properly. It
is weird when those things happen. It is like we do so well with acceptance, dealing with our cards. Loving what we have and
then boom. I am given a glimpse of what should be and I have that dagger thru my heart. Thank God it is so rare that I can
handle it. It isn't like when Lily was a toddler and seeing toddlers walking and talking about threw me into a spin tail every
time, but sometimes when it is less often it cuts a little sharper.
is the last Sunday of the church I have been attending since I was one year old. It will be a sad day of a supposedly “celebration”.
The church sold the building and they will do a restart, someday. It will never be the same. The same building I have been
going to for 27 years will be no longer Tri City Alliance. I have so many memories; I am very sad about this day and fear
I will be a wreck as that day unfolds.
in your prayers as we find a place that will feel like home.
Sept. 26th 2007:
I wanted to tell you all about Lily's field trip I went on last week. It was really fun! I went to Lily
bugs school on Friday and we walked over to another child's home. We made muffins and Lily's teacher was adamant that every
child helped. They had to match each picture with the picture on the talker, for example they had to match the picture of
flour with the picture of flour on the talker and help hand over hand with measuring and pouring it in the bowl. It took a
long time and the eggs were a bit messy, but it was really fun getting to know all the other kids. It was fun helping Lily
bake. She seemed to enjoy it, she especially enjoyed Ms. Amy popping her chocolate chips! This is Lily.... "Oh I can't chew
that piece of broccoli Mom, gag, gag".... "oh well this chocolate chip is much easier to chew Mom". Well Lily doesn't really
talk, but I know her. She is a drama queen... where that comes from, I do not know. And that is what is going on in her mind. Anyway,
after we made our yummy pumpkin chocolate chip muffins we sat and played with the dogs while the teachers cleaned the kitchen.
Then once the place was nice and clean we walked to the park and had a picnic. It was really nice, the weather was nice until
the walk back it started getting warm. Lily cried the whole way back and I think she was hot and wanted out of her chair.
Right when we got back she got to lie down on the bean bag chair and she was happier than a clam. It really was a fun time. The
kids in her class are all so sweet. And so dang cute! I just loved getting to know them all better. One poor guy was having
seizure after seizure and it just broke my heart. He was having ones just like Lily used to and I caught myself getting choked
up b/c I know what the stress of those is like on the parents and it is so hard! Not to mention hard on him! It is just so
frustrating and unfair. I really hate seizures. I hate them! It wasn't my child, but I hurt for him. He wanted to be a part
of the baking and he couldn't. He was too tired. I was so impressed with the teachers aides. I am so glad I got to see how
they handle those situations b/c we could have years like that again. We can't take a seizure free day for granted. They treated
him with true love and compassion. I could feel their hearts sad for him and they were there for him. I was so relieved to
know, if God forbid that is how some days will be for Lily, she is safe and will be comforted. What amazing hearts these
people have. What a job they do. I wanted to stay and work with them. Maybe one day when Andrew makes enough, I can do something
like that. Be an aide. Make a difference in these kids lives. They might not think of it that way, but that is what they are
doing. I am so thankful we are in the school we are in. I pray things stay like this for the entire stay at this school.
Which will be many years!
week was spirit week at Lily's school and again.... I suck!
she doesn't go to school, she does all her therapies, Tues. was twin day, and well we don't have any friends yet at the new
school. Where are Emmie and Kaitlyn? Then yesterday was picture day, she looked so cute in a black and blue outfit and pigtails,
but her note said, we might need to plan on retakes.... then today, today was a day I thought we could do a spirit day and
I look at the calendar and it says, dress as your favorite sports team. Sports? Ewwww! So I put her in a shirt that says #1
best dressed, I figure that is our sport, dressing good! Tomorrow is class shirt color; I think I can handle a red shirt.
is Lily's first field trip in Elementary school! We are going to a home and cooking, then having a picnic in the park. I am
planning on helping. Fun stuff!
been so funny lately; she is so smart I am wondering if there was a mix up at the hospital. I told her the other night that
Grandma was coming over and she said "why you have to get another tattoo?" The previous week she watched them so I could get
my tattoo on my shoulder touched up which was a butterfly and I added a Lily and a clover for Andi. It is very cute. A little
weird though that your two year old thinks that is where you are going!
has a good sniffer, I am a little embarrassed to admit this, but I ate a pickle then came over to her and gave her a kiss.
She looked at me and said "I want a pickle too!" That is either a testament to a good nose or bad breath.
I am feeling
guilty because our store Closet a la Mode is closing and we have a 75% off sale so it is super busy so when I am not running
payroll I am at the store helping my sister and I am not getting much time with the kids, which I hate. I usually take Thursdays
off and spend them with Andi while Lily is at school, but I haven't been able to do that lately. Just a few more weeks. I
miss my girls. I still stay home on Mondays with them, but we are running all over town for Lily's therapies so it really
isn't a time for us to do fun things. A few more weeks.
health wise everyone is good. Lily is still having her scream fits in the middle of the night and I will bring this up with
Neuro, but we don't go until November, since Lily's mom is stellar and completely spaced her apt. in Aug. I am still using
the sick card on that one though.
Sept. 10th 2007:
I put some pix up... remember I was sick. I wasn't supermom this bday. There are a few cute ones though.
Sept. 6th 2007:
So last night we are sleeping, Andi in our bed, don't judge. At 3am we hear Andrew's alarm go off and his key chain beeping.
Andrew's truck has been broken into 2x since we have lived her. 2x! He had his DVD player stolen and window bashed. Lovely
I know. We had no problems living in the ghetto west side Mesa, but 2x this has happened in what we were told by the police
man, one of the safest suburbs in south Chandler. But since the break in's Andrew has the top of the line best alarm possible
and last night the truck is honking, the key chain is beeping. He of course runs outside in an attempt to "catch the little
pricks" but to no avail. They were long gone.
A neighbor told us that the last time this happened she noticed a white police looking car with a big headlight, or whatever,
guy stuff. Well he saw that car earlier that day so he knew it was them. He said he had to drive around and look for them.
I lie there wide awake and 1st hear Lily screaming. I check in on her. Rub her. Change her diaper. Kiss her. Brush her
hair back. Tell her to go back to sleep. She did not. She was rolling around, grrrring (I don't know how else to describe
her loud noise she likes to make). Just obviously not going to sleep. So I leave her to play. It was 3am!
I climb into bed to a restless Andi, I knew she would be up in a matter of minutes. And she was. She cried, "mommy"
then I said "I am here" and she said "pat my back." She was back to sleep in a matter of seconds of me patting her back. I
all of a sudden felt very sad. All Andi had to say was I need this and when that need was met she was fine. But my Lily can't
tell me what she needs and that leaves me heartbroken. I realized that no matter what struggle we have with Lily, I know the
hardest part of raising this beautiful creature will be the fact that we have no communication. It was a hard fact that hit
me hard last night and those little pricks are really gonna get it if Andrew finds them. I could have slept instead of having
that realization at 3am. Ignorance is bliss, I could have gone longer.
**just to clarify, andrew's truck was not broken into, we got the top of the line alarm b/c of the past two times it
was broken into. it was just honking and the key chain was beeping.**
Sept. 4th 2007:
So I didn't forget to update, I was sick. But on August 28th 2007 my beautiful little girl turned 5 years old! 5! When
did that happen?
She went to school with cupcakes and when she came home her Grandma and Grandpa N. from S. Dakota welcomed her and she
was smothered in love! We had dinner at Peter Piper Pizza where we had Lily's family and close friends bring her gifts and
sing to her. It was a good day. I just wished I was able to have been more healthy to celebrate it!
I was lucky to have my inlaws in town since I spent most my time in bed. It was a rough sickness....
Lily is doing fabulous! She practically walked across the room for the Ortho Dr. who just said, "well that is an improvement".
She does so well with her AFO's on. She is awesome.
I missed her neuro apt. that has to say how sick I was, I have NEVER missed an apt. for her. For me, yes, but never Lily.
But I don't think we will have much changes so we will go and make it up soon.
So I will update with pictures when I charge my camera. I have been so out of it, I feel so bad, but I am getting back
to life and everything will follow suit. I will have those pix up tomorrow I hope.
So I have
decided it is ok to be smug when it pertains to your child who you were told... "Would never".
heard so many times from the Ortho
Dr. that Lily will never
walk. That is why he wouldn't approve her for AFO's, he said she'll never walk. Then last apt. he said "maybe" since she showed
a lot of progression, but he also noted that without that walking reflex she most likely will never walk. I have been very
accepting in the fact that since I have heard it so much, well she probably won't and that is ok. But guess who will take
a step when you hold her under her arms? Lily. The child that finally by her 2nd birthday would straighten her legs and
stand if you held her up. She is now having that reflex that causes her to take an actual step with her legs. It is incredible
and even more amazing that she just finally decided to do it on her own. She has no weekly hourly one on one PT. She of course
has some at school, but Lily likes to do things in her own time. On her schedule and that is good enough for me. It is progress
and as long as there is progress there is hope. She may not be able to stand unassisted until the age of 10, but who cares.
She is trying, she is growing and darn it she is learning. She will always be my darling, gap toothed, blue eyed angel that
always has me second guessing her abilities. Thank you God for giving me that extra ounce of hope I have needed lately.
you Lily for being the best daughter in the world! What a great way to great ready for your 5th birthday!!!
Oh I cut
my hair all off, 6 inches to be exact and Andi won't quit asking me "who cut your hair mommy?" Like 20 times a day. Funny
August 10, 2007
So we all went to dinner
at a close by Chinese Restaurant the other night and I got to hear about a miracle! You might hear a sense of sarcasm here
if you are listening closely.
So we are eating and over
comes a cute young girl who works there and she says “do she (looking at Lily) have cer…cerebral… pa..pa…”
“Cerebral palsy?” I ask. “Yes” she says, “because I have a sister with that.” “Oh
really, how old is she?” I ask, interested. “Um like 21 or 22” she replies. “Well she hasn’t
been diagnosed with that, but basically that just means your brain doesn’t tell your body how to move so it is safe
to assume she does have cerebral palsy” I explain. “Oh well, my sister had that, but she just needed to go to
a school and she doesn’t have it anymore…. She is normal now”. She tells me. “Wow” I say with
a not so genuine smile. I wanted to ask if she is in any medical journals or was this deemed a miracle by the Catholic Church,
but I just decided to stay with my wow and smile.
She was young, meant no harm,
but CP is not something that can go away. You can do therapy, you can strengthen, but to my knowledge that sounds down right
As a sibling to a brother
with CP, I have known that word and have known how to pronounce it and even spell it since a young age. I even gave a speech
about it in speech class and was told by my teacher that she had nothing to critique, it was perfect.
The whole thing seemed odd
to say the least. I like the whole “she’s normal now.” Yay!
So scratch the whole PT thing,
not happening. Of course. Schedule conflicts. What else is new?
Andrew is on his third vacation
this summer. He is in South Dakota, it is the Sturgis bike rally and he is “helping”
his parents out. They have a very large nice place that has cabins to rents, parking spots for trailers and a bar and restaurants.
I’m sure he is helping, but I am also pretty sure he is enjoying himself.
I am not sure what we are
going to do this weekend, but we’ll figure something fun out. Can’t be cooped up all day at the house, we all
get annoyed with each other.
Have a great
August 6th 2007:
So school is still going well. I just got a call that we will finally start PT back up starting next Wed. at 8:45am.
She will be a little late to school, but PT one on one at home is very important. It has been almost a year since we had someone
and she was about as reliable as a gypsie, so it has been almost 2 years since we have had weekly one on one one hour PT sessions.
She gets it at school, but it is less time.
Lily had her first dental cleaning today and did fabulous! She has been to the dentist since 2, but this was the first
real cleaning. She sat pretty still, with my help and they scraped and they polished and she sucked on that little sucker
thing like it was giving her pure sugar. She loved it! I think she got poked a couple times with the sharp thing and that
of course wasn't fun, but I'd cry too. She was awesome and I am proud of her! Big girl! Next apt. in Feb. 08 Andi will join
Andi seems to be giving the terrible two's a shot. I thought I wouldn't ever say that. I don't really like giving a negative
name to a sweet kid, seems like you are asking for terrible, but man.... I see where the expression comes from. Andi
and daddy are constantly fighting. She fights with the dog. Everything is hers and she likes to say "go away cross the street".
I hate when she says that. I have no idea where it came from. I don't understand why she fights with her dad so much. It is
hard being the between person, trying to make each other happy with each other. Sigh... it won't help that daddy is going
out of town again to South Dakota. He was just gone last month for a week. He leaves Wed. and comes back Sun. and then we
will have to get reaquainted with daddy again. I keep telling him not to worry that she will hate my guts in 12 years and
love him. Doesn't seem to be helping him through this phase though. He blames Calliou the cartoon for her brattiness. [Insert
July 31st 2007:
doing GREAT in K! I am so proud of her! She isn't sleeping in class, and she isn't too wiped out when she gets home. I think
she likes it. I really do.
like her teacher. She calls with any questions and I really appreciate that. Tells me she wants to really know Lily.
doing great with potty training. She does better with pee and she is still wet at night, but this is the very early start
of it and she is doing good. After we spent a week at VBS where I taught both girls in my class, Andi is into praying. It
is so cute. Last night she crossed her fingers, closed her eyes and said "Thank you God for being proud of me" then I said,
"We need to pray for our friends" and she said "pray for Kaitlyn, Emmie, my best friends and Jean. I love Jean." It was one
of those moments you are so proud of your kid you want to squeeze them in joy.
this morning I wanted to squeeze her for not joy. She refused to sit in her car seat. Ugh. I hate battles.
took Andi to Greer this past weekend and I think she had fun. I missed her a lot and glad she is home. I can't believe how
quiet our home is with out her.
my Lily, but I need my Andi around too. I really am a lucky mom; I do have the best of both worlds.
July 24th 2007:
So LilyAnna Blu started Kindergarten yesterday! Full day Kindergarten! Year round Kindergarten! Can you believe it? Can
I believe I have a child in Elementary school? With lunch money and recess. Real school.
It is all a little bit overwhelming. But it is good. The teacher is great and that is the most important thing when dealing
with a special ed classroom.
We dropped her off yesterday, but she took the bus this morning.
They said she liked the communication device they used there and that makes me happy. They said she ate all her lunch,
and that is a good thing. I am nervous that she will be very tired today. Yesterday I pulled her out at noon to go to Music
Therapy, but today she will stay until 3pm. Her teacher, Ms. Amy, said she can rest after lunch if she needs to. I am excited
to see Lily and read her note that gets sent home each day.
We miss Ms. Jean and wish she could follow us on this next big step, but are grateful for everything she gave us. And
we know Lily has a great start with Kindergarten with those fabulous two years under her belt with Ms. Jean and the FBC.
Keep us in your thoughts and prayers though as we do this transition. I am sure it is all new and a little scary for
Lily and I just want her to feel as comfortable as possible... Mommy too. :)
So what ever happened to the lazy days of summer? I am finding summer to be extremely unlazy if that is a word. With
the hospital stay, lawsuits and audits, a trip up north that turned into strep throat for me, nothing is sounding lazy. Lily
starts school in two weeks and I haven't gotten half of her stuff done, let alone anything turned into the system. Sigh.... To
top it all off, Lily is having screaming fits in the middle of the night that causes her to scream as loud as she can, like
bloody murder, and it makes me shoot out of bed and running to her room. She is just screaming, nothing wrong. So I climb
in bed with her, hold her tight and she falls back to sleep. This is strange and a new behavior and I hope temporary. The
problem is, I have a hell of a time falling back to sleep. There I am lying. Thinking of the greatest blogs I could never
hope to post. I think of money, bills, schedules, Kindergarten and last night... the future. I was almost in tears thinking
about our future. I am always told, "I don't know how you do it" in re: to Lily, but I always say and 100% believe, she
is my baby. Anyone would do what they had to for their baby. And I know I will always do what I have to do, but that doesn't
make the future any less scary. It seems like Lily, although I am sure she will learn and advance in her own way, I am a realistic
enough of a person to know, she will be pretty much like she is, for the rest of her life. And knowing how healthy she is,
I am pretty sure God willing, that will be a long life. I assume. But what is cute Lilyisms now, maybe won't be so cute
as an adolescent. Or as a teenager or young adult. Throwing her head back, shaking her head side to side. Sucking her hands
raw. Grrring loudly. Yelling out. All things that make us proud now, will they be just bigger and louder and more exaggerated? And
I don't want to think about puberty. And how beautiful she is. I know I am her mom, but down right strangers stop to notice
her beauty. In the wrong hands, I don't want to think about it. The world can be so cruel and one of the most beautiful things
about Lily is that she has no clue how cruel it can be and it would kill me if she had to find out. My future will be
worrying about her in the wrong hands. How will I handle her at 12, if I am struggling at 4. Will I have to change diapers
until my dying day? I think as a special needs parent the only way to survive is to do it as any addict does. One day at
a time. If I think about our future, I will surely break. I know that one day at a time is the only way to keep my mind clear
and positive. But at night, when I seem to deal with my biggest fears I get really down and feel like I need a big push to
get back up. I worry about Andi, Andi adores Lily now. Will there be a day where she looses her affection and she turns
to embarrassment? It is so hard to be different when you are a kid, will she be strong enough to embrace and love Lily on
an unconditional basis? Will I raise her to be that person, I need her to be? I love being Lily's mom, I really do. But
it seems the older she gets the harder life gets on all of us. She is starting to miss out on things we do and how much worse
it will be when she is older, bigger, unable to go places her chair can't go. It is such a sad thought to share the world
without her. The saddest thought though is she doesn't care. If I only knew how to wake her up. It is so hard to know she
is living in a world I don't know how to get in and she won't share it with me.
I just needed to let my emotions flow,
it is important to me to do so. I am not depressed, I was just having some stirred emotions while staring at the ceiling last
July 4th 2007
Hi folks, I know this update
has been long awaited, but life has not slowed down once for me to be able to sit in front of the computer and give the details
this entry deserves, so it may be long and winded, but it is worthy of at least 3 entries on their own.
I will start and say today
is Wednesday.We got out of the hospital Sunday, but yesterday we were at our
pediatrician because I had some major concerns about Lily.She had refused to
eat the entire time at the hospital, she had a facial rash, severely runny nose (right nostril only, of course) and constipation,
so I understood and just gave her lots to drink.Well back at home she still
refused to eat.She was drinking, but not wetting like I thought she should,
although she did eventually have a very wet diaper I still called the Dr. thinking the worse, acidosis.They got us in quickly and he walked in the room and said “well that is the problem”.I didn’t even say we were coming in about her face, but one look at her acne
like complexion and dry cracked, bleeding lips and he said “impetigo caused by possible staff and possible strep due
to the fact she was exposed” he happens to see my nieces and nephews as well and diagnosed my niece with strep last
week, she was up north with the girl the past weekend.So he said it should clear
up with antibiotics and she should start eating again, he said to of course call if he is wrong, but he said, “That
never happens”.He of course was being facetious knowing we go way back
and he told me there was no way Lily was having seizures back in the beginning.He
is a funny guy we love our pediatrician!Seriousness is for the birds.
So at present time she has
had three doses of antibiotics and actually ate a yogurt this morning, so this is hopeful.Her nose has turned from yellow snot to brown, bloody snot, so I am assuming the antibiotics will kill the obvious
sinus infection she happens to have as well….. sigh… my poor baby.
So we got to the hospital
at Wednesday at 8am.Side note, I realized I was wearing a very wrong shirt for
the hospital we were in.My “Dudes Prefer Blondes” shirt did not
go over very well at the Starbucks counter.The ethnic girls were snickering
and laughing and I felt I was back in high school.In my defense, I wanted to
wear cream sweat pants with a little blue on them.The shirt is the same blue
color but with cream in the writing. It matched perfectly.Obviously not a lot
of people with a good sense of humor were around.Back to our stay, she got in
her room and all the leads on and hooked up by 10am.I was very impressed by
the efficiency of this dept. it was a whole new wing of the hospital.Not anything
like the last time we were there for a video EEG.
The first day
she had a ton of drops and I hit the event button (a button you hit when you see seizure activity, it marks where the Epileptologist
(Dr.) is supposed to look).With every hit of that button we have a bell ringing,
nurses running in, lights being flipped on.Very dramatic, so I quickly learned
that only if she has a cluster should I hit that button and by the end of day one, I figured they had 10 drops marked, I will
just wait for a big seizure before hitting that button.
We had two mattresses on
the floor with a padded boarder called a corral.That is where Lily and I sat
and slept for 4 days.She didn’t have a lot of space to move due to cords
attached to her head, attached to an outlet, but she was able to roll around.I
made her sit up a lot and I moved her to her chair a few times to not eat for me.
Our first night was rough.Neither of us could sleep.I could have
sworn they were driving the zambonie around in circles and someone with no hands was trying to sweep.I am pretty sure they were just vacuuming and a noisy person was sweeping, but man they were loud!No seizures that first night.
Thursday was more of the
same.No big seizures, just drops.We
did sleep that night because we were exhausted.
Friday, I decided
to take matters in my own hands.Dr. wanted to sleep deprive Lily to get her
into a deep sleep, but I know that is near impossible.I did keep her awake most
the day, but I lowered her meds a bit and told the nurse she was up all day and can go to sleep.Well she sleep deprived herself on her own and wouldn’t go to sleep until 11pm!She woke up at 1:30am with what I thought was a seizure.She
screams out and I know what is next, so I hit the event button.She thrashes
around, but is conscious.I think yeah, we got it and we will go home today.
But in comes the Dr. on Sat.
morning and says, “That wasn’t a seizure”.I grilled him with
questions thinking he obviously wasn’t looking at the right spot and he described what Lily was doing and told me what
I had said.I was embarrassed, because it dawned on me, not only were we being
video recorded; everything I was saying was being recorded.That is why they
brought me that breakfast tray late; they heard me complaining on the phone that I didn’t get one.My face blushed.That was the least of things I said….
Oh well, can’t dwell.Dr. said she has a very abnormal EEG, she has seizure
activity, meaning spikes, but not actual seizures.Her drops are quick seizures,
but they are just a spike on the EEG.He said she has this strange burst of spikes
before she wakes up and he was trying to figure out if it is an actual seizure or just how she wakes up.He asks if I wouldn’t mind just one more night and he would have the nurses wake her up out of a
deep sleep and see what her brain does.This will tell him if she is seizing
in her sleep or not.I said well what about that thrashing around that looks
like a seizure and he says, “I am not saying it is not neurological, I am saying it is not a seizure”.He said it is her waking up, unknowing her surrounding, maybe a terror, and her body movements are purely
agitated.He is unsure why she is agitated.
So ONE more night.I had planned on going to a night swim party with the kids at an event one of the places she has therapies
was throwing, but that got thrown away.One more night.
Her and I fell asleep early,
we were beat. At 12am the lights came on, I woke up, but Lily didn’t budge.I smacked the mat hard next to her and she opened her eyes, looked at me and went
back to sleep.She woke up at 5am with another seizure looking thing and went
back to sleep.I had to wake her at 9:30am to “feed her” aka
shove her meds in her on some yogurt while she kicked and screamed.Dr. said
her brain activity was exactly the same when I startled her awake and when she wakes up naturally freaked out.He said it is not normal, but it is not a seizure.“And
the 5am seizure?”Not a seizure.“Again, not normal, but not a seizure”.I asked one final
question.“Can you diagnose her with Lennox-Gastaut Syndrome?”and this was his answer “well she certainly has the LGS pattern, the spike and
wave, sometimes but not always, so I can say she has a tendency towards it, but I cannot diagnose her with it.”Story of our life!Never a diagnosis
So this is a summary for
those of you like me who skip over things.She is not having seizures; other
than the hard to control drops that we will still just manage how we already are.She
has a very abnormal EEG, very abnormal movements that are unexplained and seizure activity, but not actual seizures.Sounds confusing, but to us it is comforting knowing that we are sending her to Kindergarten
in a few weeks and we can be a little comfortable knowing she hopefully won’t go status there.You never really know though.She will always of course carry
her Diastat in her backpack with her at all times and the school has to make special precautions for her drops, but knowing
she isn’t seizing and can de-sat, or cause more brain damage that is comforting.
So that was our exciting
week!Now today, we will relax and enjoy the day off!I don’t think we will be outside, considering it is going to be 115!Ugh, that is miserable.The pool feels like bath water in that kind of
You all have a lovely 4th
and I will update when we get home from our vacation to Greer this weekend.
Check out new pictures!
Andi got earings and by the way is all weaned! 2 years, 3 months and 5 days breast fed and all done!
June 21st 2007:
So my parents are taking the girls up north this weekend! I am excited about having the weekend to ourselves, but
have that nervous feeling in the pit of my stomach. Lily has gone up before, but Andi has never been away from both
of us. Andi loves her Papa and Grandma so I am sure she will be fine, but I am still nervous she won't be very good.
I worry most about sleep. She is particular and if I knew then what I know now, she wouldn't be, but she is.
Andrew and I have dinner reservations at a very nice place in Scottsdale tomorrow night, that will be fun! I was
suposed to work on Saturday at the store, but a saint said she'd do it for me. Sounds like people want me to spend time
with my husband. We are flying Andrew's younger cousin out (15 yr old) to spend time with us, she is a sweetie, but
she is coming on Saturday, so all the time won't be us alone, but I am sure that will fine with us. Too much of the
same person any long period of time, can be too much. Plus she is friends with my niece so maybe they can hang out.
I am in that state of mind, excited and nervous. I have not been in my own home alone except for maybe a handful of
mornings Andrew took Andi to daycare and Lily took the bus to school, then I might have had an hour in the morning so this
will be different.
Lily will be going to the EMU (epilepsy monitoring unit) Wed. the 27th and this couldn't come at a better time.
She is having more seizures and they are more frequent and they are getting bigger. Seems like she can't get a sleep
in with out one. Yesterday she had one with a nap, then woke up after a few hours last night with one, then this morning
she had one. She was doing so well, so of course this really bothers me. At least if she has enough on the Video
EEG we won't have to stay too long. I just wish they could figure out why they happen and how to get rid of them.
But knowing we have done everything humanily possible, I am not nieve, I know that we are stuck with these things for her
lifetime. Sigh.... If you are wondering why I would send Lily up north while she is having seizures, I will just say
she is with her grandma. My mom is 2nd best to me with Lily and I trust her 100%. Plus Lily's seizures are
not life threatening. She never looses oxygen, they aren't grand mals, she just has uncontrollable movements yet she
is conscious the entire time. Very strange but harmless. She also doesn't go anywhere with out her emergency Diastat
so I know she will be just fine.
So I am off to pack the girls bags! I will let you all know about our weekend and try to check in before the EMU.
June 15th 2007:
So Lily Bug started summer school this week, which has been nice! We do have to transport her, but Andrew and I
have been working together. I get her on Mondays and Thursdays and don't work and he gets her Tues. and Wed. when I
am working. The place is so amazing, Andi got to join in on circle time on Tuesday and she just loved it. They
had a "top secret" project for Father's Day and I am more excited than Andrew is to have him open it. He is waiting
til Sunday... so boring!
Yesterday was Lily's BFFs last day of school. Her last day forever at FBC and it was so sad. I cried so hard
while driving home from Music therapy just thinking our day is coming up too. I have started a great friendship with
Lily's friends mom and I/we are all so afraid life will be so different when our kids are all staggered across the different
cities. I know we will all keep in touch, but it is just not the same. So sad.
Lily has been having more jerks and had a big seizure yesterday after a nap. She was all over the place this morning
during breakfast so of course I am worried and so grateful we have the VEEG coming up in the 27th of June. We should
be there a few days. I hope I can get her to have one fo those big ones on camera, and not just the little ones.
I'm so glad they are going to take another good long hard look at that beautiful brain of hers.
Today is Friday and I am happy! We have nothing planned for this weekend and those are the best weekends ever!
I wish it weren't 110 and we could go to the zoo, but we will probably just swim at home and maybe see Surf's Up.
Anyone want to give Father Time a ring and ask him to pull some strings for us? I would really appreciate it. I
want these next few weeks toooo slllooooowwwww dooowwwnnnnn......
June 1st 2007:
So we are
finally catching up on our sleep. Three hours time difference really did us in. It really took three days to get
sleep and wake up back to semi normal. Andi is still waking at ; I am hoping we can fix that! Yawn....
went better than expected. Andi did request to nurse, but we flew 1st class so I wasn't sitting by anyone so we were
able to nurse discretely and she rarely cried.
day we went to MagicKingdom and that was the best day we had. We got a handicap pass that got us thru the lines super fast. We got
VIP entrance at Pirates which was awesome and watching Andi during that ride was so cute. It's a Small World was also
a great ride for the girls and so cute to watch. Lily wasn't such a fan of those, but she did like the Flying Dumbo
and Andrew said she sort of liked ThunderMountain. My sister said it was a little jerky for her though. I got Andi
to nap on my shoulder for 1.5 hours and she woke up happy. We were able to stay until about . My sister, niece and I had a fast pass for SplashMountain that I have wanted to go on for years, but Andi was getting
crabby and Lily was tired, hungry and crying so my parents and Andrew took them back to the hotel and we went on the ride.
It was a blast! It was such a cute ride! I loved it. That was the best day.
day was Animal Kingdom, it was too packed. Too packed and too packed. We wanted to go on a train ride, but the
line was 60 minutes outside so I asked if there is a handicapped entrance and they said Animal Kingdom has no handicap privileges.
He said that all their rides are handicap accessible and we would have to wait in line with everyone else. I said my
daughter can't sweat, she can't sit in the heat for an hour for a ride and they said sorry. So we didn't do much there,
we went to the petting zoo and walked around. That was my least favorite day. That night Lily cried all night.
We couldn't figure it out, she finally fell asleep but I had her stay with Grandma back at the hotel while my sister, niece,
Andi and I went to Sea World and mom said she had the hugest poop and was in a fab mood afterwards.
was ok. Andi seemed to want everything in the place, more than usual, and was just whiney. I think just too much
day was MGM and that was pretty fun. I love movies so it fascinates me to see behind the scenes. Andi played in
the Honey I Shrunk the Kids play area and didn't want to leave, we let her play for almost an hour, but it was too hot and
stuffy in there so it caused a huge tantrum when I carried her out. That was it for that day!
back Andi didn't sleep. She was crabby but not that bad. I can't tell you how glad I was to be home.
It is funny
though, I constantly felt like I was looking for my Holland
amongst Italy. If you read Trip to Holland in my inspiration page, you know what I am talking about. That writing
is the best explanation of what life is like for us. It is beautiful. But I was thinking the whole time I was
there, where is Holland? This packed place is buzzing with people, it is exciting,
and it is stem overload. Where is Holland?
I found it twice. I found Holland in the shade two times and I got to sit and feed Lily and talk
with her in times of quiet and shade. I constantly felt this is too much for Lily. Too much heat, too much sounds,
too many people. She of course was a champ the whole time, she was an angel on all the flights, and she is such a trooper!
But I still feel this urgency to get her safe, keep her safe. I found that
there wasn't a lot she can eat there and that was stressful. And I kept thinking about her in that heat, even with the
little spray bottle and fan, it all just stressed me out. But not her, she is my hero. She is such a trooper!
graduated from Preschool on Wed. I have a special page for that under her 4 year old pictures. Too much to put here!
May 22nd 2007:
So I guess
just like the theme song goes: "You take the good, you take the bad, you take them both and then you have the facts of life."
it always seems you take the good with the bad. It seems we had this fabulous, funny day then screeech halt errrrr....
crappy days. Friday night Lily started crying for it appeared no reason. Then after a lot of drops and nonstop
crying I gave her half a klonopin. Then she slept all night, but woke up at and cried and cried and cried. She was having myoclonic jerks and atonic drops and so we gave
her another half klonopin and let her go back to sleep. I had to work at the boutique and Andrew had to work at a big
custom house so I had to leave the girls with Ms. Maria. She has watched them every Sat. I work for over a year now
so we love and trust her. She said Lily ate, but she had to be held or she would cry all over again. Andrew got
home and gave Lily another half Klonopin b/c of the non stop crying and little seizures. I think that was too much,
but he felt he had to. She slept the rest of the day, night and was semi ok on Sunday. It was a lot of off and on whining,
but I didn't want her to have anymore Klonopin. I checked her up and down. No fever, no hurt bones, no bruises,
no cuts, no diaper rash. I messed with her ears and she seemed unfaised. I don't know what her deal is.
I really think she just hates the drop seizures.
it all she had a great day at therapy. Music said it was one of her best days in months. Then we went to neuro
and he is upset with all the drops.
So he asked
if I would like her to spend some time in the EMU (Epilepsy Monitoring Unit) and I said YES! She hasn't had any EEG's,
MRI's or anything in years. She needs to have another good once over. He was all for it as well and wants to take
another good look at her. I will update when we get a date for the stay. I really am happy to have this done.
It has been so long since we have had any hospital stays, but this isn't really a hospital stay, it is more like a long test.
I guess they have a new peds unit for the EMU. When we did it last it was in an adult center, it was old and gross.
I am excited to see this new place and have her looked over to see if there is anything more they can do for her.
since her grand mals are almost nonexistent I haven't worried so much about the small ones, but Neuro seems to think it is
a big deal and we need to take a good look at what is happening.
you all updated.
Orlando in two
did not like this entry! I think I need a medical spell check.
May 18th 2007:
Isn't she the cutest? Lily had her third giggly day in her life. She is never a real smilely kid. Not
that she is unhappy, it is just hard to get her to smile, but yesterday was the third day in her life that she was all
smiles. I just wanted to share some shots of it!
May 16th 2007:
Things are still going well. Lily is having more drops, but we will see the Neuro on Monday so we will see what
changes should be made. I do have Klonopin to give her for emergencies. I gave her one before bed last week
and the poor kid was knocked out all night and most the next day. I realized it was 4 times the dose of her last Klonopin
rx! So now sometimes I give her half before bed to prevent the big seizures during night time and it kind of helps the
drops. Not a lot, but it relaxes her.
We are going to Orlando to Disneyworld next Thursday the 24th. I can't believe it is almost here! I think
we will have fun, getting there is always so rough, but my dad will be on our flight and since Andi adores him, I think that
will help. We also got first class so maybe Lily's legs aren't long enough to kick the crap out the person in front
of her seat. I hope not. I also hope no one is too stuffy and will hate sitting by us. Oh boy.... You know
how those first class travelers are... :) Not like us, that is for sure.
Lily will miss next Thur. and Friday and then the Tues. before the last day of school. I think that means she will
miss "practice" for graduation. I get back from a long trip and have to attend her graduation the next day. I
think I will just die. I am so not looking forward to this day. I cannot imagine her days at FBC are numbered.
I can't imagine them being gone. Sigh....
Oh well, we will have fun before then. :)
May 8th 2007:
We had a great weekend! Friday night we went to the Improv and saw a Comedian named Josh Blue. He happens
to have cerebral palsy and won Last Comic Standing. He was HILARIOUS! Absolutely hilarious! My mom laughed,
my sister laughed, my aunt laughed and so did my brother. We took my brother who also happens to have CP and he just
laughed and related to so much! We really enjoyed ourselves! Our hubbies went too, by the way, and they all laughed
as well ;)
Saturday my mom, Andrew and I took the girls to Sesame Street Live. I didn't know how Andi would be, but she really
shocked us. She sat in Grandma's lap and sang, and clapped her hands and really enjoyed herself. She said "Elmo
hold me?" and "Zoe hold me?" It was so cute.
Lily also enjoyed herself. I thought it might be overload for her, but totally not! She wiggled her body,
sang in Lily sing and seemed to really have fun. She loved all the glow sticks at the place and smiled and grabbed hers.
I never take the girls to stuff like that b/c I am afraid it won't go well, but now we might. I think it helped
being only 6 rows back too! They got to see them up and close! It was really great.
Sunday was nice and relaxing. Which was much needed!
Lily is having a lot of drop seizures and I am glad we are seeing Neuro in two weeks b/c we really need to figure something
Otherwise all is well! Girls are good, parents are good, life is good!
May 1st 2007:
Last month of pre school..... sigh.
So things are going ok. Lily is having more drops which is so frustrating. I think we are going to have to
up her meds or add a new one. I really don't want to, but after she smacked her face on the tile after a drop causing
her nose to bleed for about 10 minutes I think we need a change.
Otherwise she is doing great. Happy, healthy and silly. She is growing so beautiful and I just love her to
Andi has been very funny lately. We were watching Dancing with the Stars last night and she kept wanting me to
rewind each dance and kept calling all the girls Ella and the guys boy. "Ella and Boy dance again." Then when
Joey and Kym danced she said "Ella cute! Kiss?" and she kissed the TV. So cute!
Then this morning she had to take a back pack and rolling suitcase outside with her to send Lily off on the bus.
She is a character.
So both girls are doing well. I am doing well. Andrew is out of town painting so that is kind of a bummer,
but he has to work.
So just wanted to give an update. We see Neuro later this month so I will update after that.
Oh and wish us luck we are going to Disneyworld at the end of this month! That is a long flight!
I really don't have much to say. Things are going well.
been having a lot of drop seizures lately. She has been having a big seizure like every two weeks at night. I
don't mind them when they are spaced out that far apart.
she is very alert, very active and a lot of fun! Andrew threw his sock at her and it landed on her tummy and she just
scooped it up and held it. I sure hope it wasn't too stinky! She kept doing it time and time again when we made
a game out of it.
sitting so tall and well! She is eating great; she had two mini corndogs last night! How big girl is that?
She's doing great!
doing well also. She is using sentences, can count to 10 and is just so loving. She can be a pill and likes to
get her way, but that kid has a heart of gold! We went to visit Lily at school yesterday and when we left she kissed
every single kid and most of the teachers. Melts your heart when you see your child being so sweet. Makes you
think you are doing something right.
No Dr. apt.'s
coming up so I really don't have much to talk about. I just wanted to pop in and say hello.
some new pix of Lily on her page. We had a fun day last weekend. A program in AZ called Raising Special Kids and
they throw this amazing day at the park once a year and it is called Special Day for Special Kids. They have so much
for the kids and it is all free for families. It was very nice and I truly appreciate that sort of stuff. Just
being able to go somewhere as a family that is completely handicapped accessible. So nice! Lily met the Cardinal
Bird guy thing; I am not much of a football fan and the Suns Gorilla! So much fun!
April 10th 2007:
So we had a nice Easter. Andi got a much needed hair cut, the girls painted eggs and looked their best on Easter
I had a monologue to do, as Mary, mother of Jesus. I had a hard time with it and I needed three cues. I wasn't
in my zone. I was embaressed but realized I better just get over it. Everyone at the church knows me, loves me
and knew I had recently found out about my dear friend who lost her baby during the delivery. That happened on Friday
and my brain has been scrambled eggs since.
Chrystal has been a dear friend since we were toddlers. We went to church together for YEARS. Her and I used
to live at each others homes in the summer time and we made movies together. We would let our imagination soar and would
play "Pete's Dragon" after chuch in all the over grown shubbary in the back of the church. We imagined him to be real,
so therefore he was. We never went to the same schools and we often had different interests so as of late we stayed
in touch thru Myspace and church events. It is nice b/c her family and my family have a long history together so we
always see each other at a wedding, funeral or some holidays.
She knew Jadon Eli would have problems if he did make it but her and her husband had a strong faith that God would be
in charge and he was. She delivered and lost him at the same time. We never know why God does the things he does,
but we have to trust he knows why.
I know I had so many struggles when Lily was a baby. I wanted to know what I did wrong. Why did I have to
have this child. They are hard questions and only God knows the answer. It is just hard when you want to say the
right thing, do the right thing and sometimes there just isn't any right thing.
Keep her family in your prayers if you will.
April 4th 2007:
So I went
to visit the school Lily will attend for next year today. I have been anticipating this, sweating over this and last
night, loosing sleep over this, and well I am happy to say all for nothing. I mean, transitioning will break my heart.
It will cut me to the core and that last day of school, God help me is a Wednesday, payroll day, I don't know how I will walk
out of that place let alone go back to work and pay 300 people. Correctly, I should add. But the new place isn't
near as bad as I anticipated and it was almost actually ideal. Ideal would be staying at FBC with Mrs. Jean for another
18 years, so this is the second best. I really liked the teacher, who we happened to fly together and talk a couple
years back. Small world, I know! She has a good philosophy and seems to really love the kids. They divide
the kids not by age but by skill which to me makes me more comfortable. Lily will be in a class with kids similar to
her skill wise. Almost all kids in her class are non verbal, that doesn't mean quiet, just non word speaking.
They use communication adapted equipment and they go thru the same motions other classes go thru. She will go on field
trips once a month! Eat out in the community. She will have a "buddy", someone her age to go to other classes
with, when we are ready to integrate her more.
feel I can take a big sigh of relief. I had a good team of support this morning, Andrew, Mrs. Jean, the school psychologist
and the district vision specialist.And now we have a good idea of exactly what
needs to be in the IEP we are filling out soon.Of course Mrs. Jean will be there
when we fill it out so we’ll be sure that the classroom is perfectly adapted for my Lily girl and make the appropriate
goals she needs to push her, but not too hard. I am such a softie. I thought all the kids were just adorable!
All of them doing what they can, it is funny, when Lily was a baby and we attended Infant Program at the FBC I was scared
to look at the Preschool. I was scared to look into our future. Having a baby you don't know what way she will
grow, but knowing in your heart it won't be "normal", seeing your future is frightful. But today, it wasn't. I
thought the kids were all so cute. Even the little trouble maker that I think comes with his name. The two beautiful
girls, one with a long pony tail and huge smile who walks and speaks a little and the other who spins everywhere and likes
to touch people. The little guy taking assisted steps with his AFO's and the big guy in his chair elevated back taking
it all in. There were 9 all together, one teacher and three aides. Not a bad student to teacher ratio, I don't
this is a good thing. If we HAVE to move on, then this is the right move. I pray it is.
is Farm Day. Farm Day is the best! I know both girls will have a blast, as long as we remember the sun screen!
It will be a scorcher! It is summertime here in AZ!
Skylar is 10 today. I missed school my senior year to watch her come into this world. Since when did birthdays
become a sad occasion? Is it when it makes me feel old?
we had a great weekend! Saturday we went shopping with Grandma Cheryl from South Dakota, then Gma went back home to give the girls naps so I could get supplies for Sunday’s
party. Then Saturday night, we went to Andi's favorite place in the world! Peter Piper Pizza! She had her
cousins with her and she had a blast. She loved us singing to her so much, she put the candles back in
and wanted us to sing again. She blew out her candles twice and chowed on her cake. She was hilarious and
we had a great time.
we had a big party at the park. We shared the party with cousin Skylar and it went very well. We had friends
and family show up. Andi made out like a bandit and absolutely loves her Baby Alive from Grandma Nancy. Although,
I feel like I need to take care of her properly since Andi feeds it stuffed, then it cries for a drink, but Andi
doesn't give her bottle right, so I am holding a doll, giving it a bottle. Oh brother.... I am such a sap.
I feel bad when a fake baby cries....
So we had
a great time, Lily is on Spring Break, which is good since she got another ear infection. Her constant runny nose is
now causing other problems. That sucks. She is home with Grandma Cheryl. She will be here until
tomorrow, and then she will spend her days with Nurse Jennie when I have to work.
her 2 year well check and she is 28 lbs and 36"! She is 75% for weight and 95% for height. My tall little girl.
I wonder how I got such tall girls.... :) I am only 5'11.5".
post pictures either later today or tomorrow. I forgot to bring the cord to upload them here at work.
March 16th 2007:
So sniff, sniff.... my baby girl will be 2 tomorrow. The day when eveyone is drinking and puking green beer, I will be
celebrating at Peter Pipper Pizza the begining of a new year. I am sure since the past year has been filled with tantrums,
biting, hitting and pointing a finger at me telling me no, this new age of 2 will be filled with more of the same. But also
filled with big grins, sloppy kisses, never ending energy and hopefully still a little girl absolutlely in love with her mommy.
The little girl that loves fancy shoes, but never lets me brush her hair. The little girl that laughs huge belly laughs when
you kiss her neck. The little girl that dances and shakes her butt anytime music is playing..... my little girl is growing
up and I love her more every day. Happy Birthday my sweet, fiesty little St. Patrick's Day baby!
Looking at her page today makes my eyes misty. I can't believe two years have come and gone so fast!
Cheryl came to town yesterday and the girls love it! Andi napped for 1.5 hours in her crib for Grandma. She just
wanted to go in her crib and that was it. I wish it were that easy for me!
I am getting
excited for Andi's birthday. I love my kid’s birthdays! I think we may go to the zoo with Grandma and then
for Pizzie! (Pizza) She loves Peter Piper Pizza! Her birthday party will be Sunday, since someone in my family
always has to be at the store on Saturdays. I cannot believe my baby will be 2! Sigh.
been having weird little seizures that really upset her. She kept crying so much last night that I just brought her
into our bed and that kid slept the whole night thru. She usually wakes thru the night but she slept great hogging my
side of the bed. I didn't mind though. That face is so beautiful I could stare at it all night long. It
really is mesmerizing. I know I am her mom, but man... she has this face that just looks heavenly. I know I am
sounding corny but I couldn't help but stare last night at her.
sad before the bus came, so I don't know if she isn't feeling well or she was jealous Grandma was staying home with Andi.
Her teacher is the best on calling when anything is wrong so I am sure I will get a call if she is still sad. Oh and
I mean anything! I got a call once b/c the night before Lily ate a bunch of hot pink ice cream and apparently it made
her poop look funny. Mrs. Jean called and said, "Her poop is funny looking". I said, "Its cotton candy ice cream".
anyone at public school going to call me like that??!!!?!?! Sigh.
March 6th 2007:
Hello there! I thought I would give a little update. I called the school Lily is to attend Kindergarten at
and they are calling me back. I told them I need to see the school and her class before our IEP in April. We will
see if I actually get a call back.
I have been having a hard time with Andi lately. I am not sure if it is that 2nd birthday looming over our shoulders
or and I am hoping it is her 2 year molars bugging her. She is so whiny, and just throwing tantrums at the drop of the
hat. I have been so proud that I have been able to curb those but lately no matter what I do she throws one.
It is sorta funny though. She is jealous of Lily's middle name. I was telling her that her name is Andi Jane
and Lily is Lily Blu. Well she kept saying "Sissy Blu, Andi Blu". I said "no Lily Blu and Andi Jane" and she said
"Sissy Blu and Andi Blu". I guess at 2 Blu is a cooler middle name than Jane. When she is older she
will get to hear all about her incredible Great Grandma Norma Jane and then she will be proud to be her name sake, but until
then I guess I have a Sissy Blu and Andi Blu.
Feb. 27th 2007:
long since my last update!
once again getting over another one of her "colds". I put that in parenthesis b/c we have no idea what it is.
She has a runny nose out of one nostril. It seems to happen about 2-3 weeks out of every month. I am not exaggerating,
ask her poor teachers who wipe it all day.
she didn't have any snot this morning, so that is a good thing! She is eating great, drinking great. She is super
smiley and happy.
we celebrated her daddy's 25th birthday; I know I robbed the cradle. We had fun. Lily loves cake and Andi love
birthdays so everyone was happy. Andi blew out the candles. I think she will do great next month! She is
already saying "twwwoooo" when we ask her how old she is going to be. It is so funny.
some ear infections in both girls, and colds we are now on the road back to healthy. Hopefully we can stay here for
believe we are almost into March. How can a school year fly by like this?
indeed starts Kindergarten next year, she will start in JULY! She will have a one week break from summer program at
her preschool and then she is in K. I can't even believe it or imagine it. She'll be a little 4 year old in Kindergarten.
I better get. I just wanted to share. It has been awhile.
Feb. 13th 2007:
Sigh.... So we had Lily's IEP on Friday and I never even asked "what if" about another year in pre school because these
people were not budging. I was testing the waters with questions about flunking prek and the district lady, aka "fancy
pants" said "that doesn't happen". Then I was saying just 4 days, if she were just born 4 days later, etc. And fancy
pants said "ahh too bad".
The good thing was the Vision Therapist for the school district we are in was there and she is very sweet. I said
that I needed to see this school and she said she will go with me. She was very sweet and seemingly willing to settle
my nerves. Our beloved Mrs. Jean said she would go with me as well to the school and I told her that she is going with
me to every meeting I will ever have regarding Lily, and maybe not just Lily. Just any meeting my butt has to sit in,
Mrs. Jean you are coming! I was about in tears three times in the meeting and told myself to chill. I drove back
to work in a daze and spent most the weekend with a stomach full of knots.
I can't help but think, who will meet her off the bus? Who will hold her when she cries? Who will sit
and have the patience to feed her? Who will make sure her surroundings are perfectly safe if she has a seizure?
Who will take care of her if she has a seizure? Who will sing "Walter the Waltzing Worm" at the end of the day
with her? These people in this new place are new. They haven't known Lily since she was one year old. They
weren't visiting her in the hospital after brain surgery. They won't love her like she has been loved. Ok Kim,
step away from the computer....
Ok, I am at work... chill Kim. Chill.
It is Feburary. Tomorrow we have our sock hop at Lily's school and she will be in the queen's court, or possibly
the queen of the hop.
Then we have literacy day in March and farm day in April. We have three months. Three months.... three months.
Three months???? That is nothing!!!
Please pray for all of us that this new school is what Lily needs and what her mommy needs. Sigh.......
Feb. 7th 2007:
ever met someone who says, "I don't like that?", and then you ask, "Have you ever tried it before?", and they say "no."?
is that? I find it extremely annoying. I like to think of myself as open minded and I found myself being very
close minded about Lily's school situation.
I adore The FBC and would love Lily to attend there until she is 21, but she can't.
to put my big girl pants on and I just made a call to the school district and asked which school Lily is zoned for. She
said she will call the vision therapist for Chandler and call
me back. Once I get the school name, I will make an appointment to see the place and go from there.
this place is crazy. I mean if it is a mess and I have a gut feeling it is not the place for Lily, then I will fight
for Lily to attend the FBC one more year. But I need to make sure I am not fussing over nothing.
there will never be an environment like her preschool and it is a sad thing, but a reality. So Friday I will just deal
with Lily's IEP for what it is. Work on Lily's goals for the rest of the year and then deal with the kindergarten issue
after seeing the school.
the way is very fussy and cranky. We don't know if it is a yeast infection caused by the antibiotics she was on, or
her ears haven't cleared up. I think if she wakes me up again at for the third night in a row tonight, I will call the Pediatrician and have her checked out.
wanted to share that info with you all.
Feb. 4th 2007:
Lily is all better and feeling good again!
She is eating pb&j sandwiches at lunch now instead of mac n cheese, and she ate a grilled cheese sandwich today at
lunch! She is really learning and growing at a rapid speed which is incredible to watch.
This Friday we have an IEP update meeting. If the lady from the district actually shows I am prepared to tell her
that I am petitioning for Lily to get one more year at preschool before kindergarten. Her b-day is 4 days before the
Sept. 1st cutt off, and I am not sending her to K without a fight. I hear this battle never goes the parents way, but
you never know.....
January 27th 2007:
So a quick update to tell everyone my poor Lily bug has a double ear infection and sinus infection.
She has this constant runny nose and this time it turned ugly.
She is doing better now, but was really sad. I never see her so sad, so I hate it when I do.
Andrew is snow boarding in Greer once again so I am a single mom this weekend. I think we are going to take it
very easy. Lily did have a make up OT today but it is done and we are staying in and relaxing.
Have a good weekend!
January 24th 2007:
So we spent the weekend up in the white mountains. Greer, AZ to be exact. We got snowed in. It never
stopped snowing! I was so sick of being in the house and being cold. It was beautiful, but being in the house
all weekend with the girls was a bit much. I did get to slip out for a massage which was wonderful, but I am glad to
be home for sure. I just can't imagine living where you have to bundle your kids up every time you step outside.
I did get some cute pictures of the girls outside so I am glad about that and will post when I get a moment.
When we went to the store before we left I had Andi try on a jacket and she said "thank you mommy" when I put it on her.
It was so cute and she never took the thing off!
When we came back home I had to get the mail so we went in the Dale Jr. race car from Halloween. It is the closest
thing we have to a double stroller. We went for the mail then Andi insisted on playing outside. After that long
weekend I was up for it too, so Lily went in her swing and Andi played on the other swing and slide. We played
for about 30 minutes, but it was a bit chilly so we went inside. Well Lily was still so freaking hyper from the swing
that when I put her in her rocking chair she rocked it so hard she flipped right out. She cried but she was absolutely
fine. It was pretty funny, she just loves that feeling of motion. Now Andi keeps saying "sissy, outside?"
Yesterday Lily had a "snow day" at school. They have some one bring snow in and the kids play in it. They
made a hill and Lily got to slide down in a tumble form chair. It was so cute, she just loved it. I got it all
on video. Wish I could figure out how to share it. It was a lot of fun. I just love visiting Lily at
school, I could spend the whole day there if they let me. Andi came as well and had a blast too. She loves Lily's
We had to laugh the other night as a naked Andi walked around like a monkey. Like with straight arms and legs crawling.
I said to Andrew "and she's our "normal" one", it was even funnier b/c Lily let out a laugh right when I said that, like "yeah
Lily had a neuro apt. last week. We aren't making any changes, but he wants to have a test done to make sure the
Vigabitrine is not causing vision problems we aren't seeing. He asked if it is will we stop using it and I said "I can't
answer that, it is a, cross that bridge when we get there, type of thing". He understood, but is concerned.
I really don't know what to do. If she is getting retina damage will we continue with the only med that has ever helped
her? It seems rather unfair to even be faced with that. She needs vision to develop but she also needs seizure
control to learn and develop. Is life ever fair? I know no, but c'mon.
I also forgot to mention Lily lost a little class mate last week. Sweet little Michael. He had a great big
beautiful smile and passed away far too soon. Kind of goes along with my rant about an unfair life. Please keep
his family in your thoughts and prayers please. That is something no family should have to face. So sudden, so
January 18th 2007:
I forgot that Andi turned 22 months yesterday. In two months she'll be 2! What the crap!? Where does
So we had a few apt.'s lately, nothing exciting, but I thought I should update.
Lily had a 4 year well check, a little late.... anyway she is 43 lbs and 44.5 inches!!! Holy crap, she is huge!
She had to get some booster shots in her legs and she cried and cried and cried. I know those tetnus shots are painful,
I had one a few years back so I understood the sadness, but three days later she was still standing like a flamingo.
She was so afraid it would hurt long after the hurt was gone she wouldn't put her leg down. She is our little drama
queen. So cute and silly.
We went to the Ortho Clinic which always sucks. I HATE clinic. Makes you feel like some sort of animal.
Anyway, the guy went from telling me last year "she'll NEVER walk" to, "wow she is really improving, maybe she could".
Andrew went with us to that apt. and it was funny. He'd give her life history to anyone who asked. I have
learned after apt. after apt. to give the goods to the Dr. and that is about it. He doesn't go to many apt.'s so I just
let him waste his breath. It was kind of cute. Anyway we have a neuro apt. this afternoon after school.
Not that will change much, I don't want to touch a thing. Things are going very well and I just want a follow up.
We are going up north this weekend and going to enjoy some snow! I can't wait to see how Andi reacts to the snow.
I think it will be a lot of fun! I'll take pictures.
to say I put up a few new pictures from Christmas Day at my mom's. I still don't have ours from our families Christmas
morning. I will get around to it; I am sure before July 4th :)
tried to kill Lily the other night by giving her an M&M, while Lily was lying, on her stomach. Lily was coughing
and choking and I asked Andi if she gave Lily a M&M and she nodded yes. I calmly said "that was very nice, but don't
do it again". Thank God Lily was able to cough to get it to pass thru, but that was scary!
back to school after the 2 week holiday and she seemed so happy to be back!
called to tell me that she and her little BFF Emmie were wearing the same outfit yesterday. What teacher not only cares,
but calls the moms to tell them about that? I mean could Lily have a better teacher? Absolutely not! Mrs.
Jean, you are the best! We love you! PLEASE God, let me figure out how to get Lily another year at that place
So I am sure most of you have heard this news story:
is about a child with a severe neurological disorder, much like Lily and her parents decided to stunt her growth and give
her a hysterectomy, remove her breast buds, and give her hormone injections to stunt her growth.
the media sure seems quick to judge this as inhumane and other choice words, but I don't think any of these people have the
right to judge.They do not understand what it is like to know that your child
will be your responsibility for the rest of yours or their life.Lily has the
potential to be 6' tall.She will be runway model gorgeous but completely stuck
in her body.The odds of Lily learning to walk are slim, to be realistic, and
she will most likely need me and Andrew to lift her from seat to seat.Imagining
her future is scary to me at times and I think these parents were doing what they felt was the best option for them.
am not saying I would do that, not at all, but I can see where they are coming from and I think if Lily was in more of a vegetated
state it may be an option for us.Thankfully Lily, although very low functioning
on all aspects, she still moves around, and I think as time goes on she will be able to help more and more.She is now able to stand with assistance when I take her out of the bath which is an amazing amount of
help on my back so little things like that make me think she will be able to help more and more, but maybe when we get to
9 and we aren't anywhere closer maybe that will be an option for us.
don't know.I just wish people would be a little less quick to judge, especially
something like this where most people haven't a clue what it is like every minute of the day you care for someone who cannot
at all care for them self.
can't imagine if I had Nancy Grace and Geraldo piping in on whether or not I should have had Lily's Corpus Callosotomy.
Jan. 3rd 2007:
So we rang in the New Year in a uneventful way... sleeping. That is ok though. We are all healthy and very
I know I better knock on wood but Lily has stayed out of the hospital for almost 2 years now. We went all 2006
with out even an ER visit. She hasn't had more than a sinus infection! I am knocking on wood as I say all this.....
My Grandpa had double bypass surgery yesterday and he is doing very well. He is already off the vent and he has
even gotten up to walk a bit. He is such a trooper! We are all so happy. He is the only living Grandparent
I have left so we would like to keep him around a bit longer. We love our Grandpa Jesse.
Andi is doing great, learning more and more each day. I can't believe the vocabulary this kid has. She'll
just say things and we are like, what?! How do you know that? I am guessing daycare has a lot to do with it but
maybe she is a little bit smart on her own too. :)
Lily has been coming to work with me every day last week and this week. She is out of school til the 9th and her
nurse is on vacation. She is easy to watch but I feel like rolling on my office floor isn't as much stimulation as she
needs, but what can I do? People need to get paid if I have a sitter or not. She is happy right now, bouncing
on her tummy and "talking" Lily talk. She is so darn cute.
I won't name any names but someone (under the age of 2) messed with my camera and it isn't in working order. I
used my dad's camera on Christmas Day and I am waiting him to email them to me so I can share with you all.
I better get back to work.
Happy New Year!
December 27th 2006:
Well Happy Holidays to you all! We had a great Christmas and we are all happy and healthy! Lily unwraped
a few gifts and seemed to have fun. Andi was really excited to unwrap gifts and loved every toy she got. She was
so excited with an Elmo shirt she tried to put it on right when she saw it. It was very fun!
Lily had her school program on the 22nd and every student did a skill and Lily's was holding her spoon and her teacher
aide guided her hand and she took a bite herself of applesauce. If I can figure out how to upload the video I will :)
Lily is off school for the next two weeks and her nurse is out of town so she is coming to work with me and dad picks
her up in the early afternoon. I think it is boring for her but what can we do?
We have Andrew's brother and wife coming out this Friday for a visit and we are very excited. We always have a
good time with them so this is exciting.
We hope you all have a safe and happy New Year!
I can't believe in less than a week we will be ringing in 2007! WOW!
December 20th 2006:
Sorry I haven't updated in awhile. Life is hectic!
Everyone has been (knock on wood) healthy and happy. I had my 28th birthday yesterday and was spoiled. My
favorite gift was a cat. He will be 2 on Christmas day and just the sweetest loving cat in the world. He was named
already, Kean. I am not kean on the name (lol) but Andrew says we can't rename him. He said it would be like renaming
Andi now. He's weird.
The girls love him and Andi calls him "meow". She now has to say "bye bye Sissy, bye bye La La, bye bye meow" before
we go anywhere. It is funny b/c she says "bye bye sissy" when we leave usually 30 minutes after the bus has already
gotten Lily. La La is our dog, Hailey. I am not sure how that name happened but it is pretty cute.
Lily is doing fantastic! She still has her drops and had a big seizure last week but she is growing like a weed
and learning new skills. She loves for us to put us singing on her switch and she hits it over and over. Right
now it is me singing Jingle Bells. I don't like hearing my voice over and over again but if she's happy, that is all
She has her Christmas Program on Friday at her school. I can't wait, they always go over the top. Plus seeing
Lily on stage doing a skill makes me very proud!
I was in a Christmas play this past weekend and it went great! We have been practicing since early November and
it went flawless! It was a big commitment for me and for Andrew to watch the kids but I loved doing it and am a little
sad it is over.
I have all my shopping done and now am hoping to get in some baking and relaxing before the big day. I am really
excited to see Andi's face when she opens her TMX Elmo (shhh, don't tell her!). I got one off Ebay since the kid is
Elmo obsessed I couldn't help but get it for her and Lily. We can hook him up to a switch for Lily so she can hit the
switch and make him do whatever it is that he does.
I wish you all a very Merry Christmas and Happy New Year. We are looking forward to this holiday with our family.
December 6th 2006:
Last night while driving home from a very lovely "mom's night out" with the mom's from Lily's school who all have a special
needs child, and I was listening to Delilah, and of course I started to cry. I was thinking about, not even listening
to "Mary did you know".
Now let me back up and tell you all how much I adore Christmas. Always have, always
will. I have always felt extra special b/c my birthday is less than a week away from Christmas and I have felt that
this is *my* holiday. I love buying gifts, I love finding the perfect gift and watching the person you searched for
open it and actually smile. I love receiving gifts as well, I love Christmas music, I love the cool weather (note NOT
cold weather, I love an AZ Christmas). I love the lights, I still remember every Christmas Eve we would drive home from
my aunt’s house and my dad would take the long route home stopping to look at lights. This was way before the
waving Santa’s and head moving reindeers. I still take a detour at night just to see the lights.
have always been this way but I am just giving some background so you understand my love for all things Christmas but this
was before Lily. The first Christmas with Lily was in 2002. Lily was 4 months old, she had been in and out of
the hospital her short life, I had just lost my Grandma, and she was still having out of control seizures. We had no
idea what to do or expect for her future. We were scared and unsure. I am not saying her changed my disposition
on Christmas, I still decorated the house, had a big tree and loved sitting with her and watch her look at the lights, it
was the only thing I would see her actually look at. But one night I was holding her and the song "Mary did you know"
came on and although I have always loved that song, I never really listened to that song like I did that night. I heard
the words and I just started bawling. I felt exactly what they were saying. The song is so powerful if you give
it your attention. "Mary did you know that your baby boy has walked where angels trod?" "The child that you delivered
will soon deliver you" I mean, WOW, powerful words. I sat there and held Lily, the child that I was so unsure of, the
child I had no idea of her future and I thought "Kim, do you know what a blessing you have in your arms?"
had no idea what would happen when she got pregnant, she had no idea what to expect from this child, she didn't know the hurt
she will face 30 years down the road. She just knew she loved her child and she would hold him, love him and raise him
to the best of her abilities. She had no idea those tiny fingers and toes would heal the sick and fix the broken.
I had no idea that Lily's tiny fingers and toes would touch people all across the world. I just knew that no matter
what happens I had to hold her, lover her and raise her to the best of my abilities.
**Mary did you
know, that your baby boy would one day walk on water? Mary did you know, that your baby boy would save our sons and daughters?
Did you know, that your baby boy has come to make you new? This Child that you delivered, Will soon deliver you!
Mary did you know, that your baby boy Will give sight to the blind man? Mary did you know, that your baby boy Would calm
a storm with His hand? Did you know, that your baby boy Has walked where angels trod And when you kiss your little baby,You've
kissed the face of God? Oh, Mary did you know? Mary did you know? The blind will see, the deaf will hear, The dead will
live again,The lame will leap, the dumb will speak Praises of the Lamb? Mary did you know, that your baby boy Is Lord
of all creation? Mary did you know, that your baby boy Will one day rule the nations? Did you know, that your baby boy
Was Heaven's perfect Lamb? And this sleeping Child you're holdingIs the Great I AM**
December 5th 2006:
So I got home at a quarter to 10pm last night after a long play practice and like usual I peek in Lily's room before
heading to our room and not only do I see a sleeping Lily but also a sleeping Andi. I was very confused, I thought it
was adorable but I was very confused. I wake up Andrew to ask why Andi is in Lily's room and he says "I thought she
is in bed with me" he fell asleep before Andi did, don't get me started on that but apparently Andi got out of bed with Andrew,
went into Lily's room, shut the door behind her, climbed into bed with Lily and fell asleep. At 1pm I heard Lily whining
so I went in there and I think Andi was trying to cuddle her, because that is what Andi does when she is next to someone in
bed and Lily didn't like it. I calmed Lily down but Andi heard me and wanted me to take her. I was shocked that
Andi was awake just lying on the pillow while Lily was whining. I think if I never went in there she would have gone
back to sleep on her own.
Anyway, I thought it was adorable.
I have to get back to work but wanted to share that while the memory is still so vivid.
believe November is almost over? That 2006 is almost over? That I will be 28 in a few weeks? Man, 18 feels
like yesterday..... sigh
had a nice Thanksgiving in town here. We usually go to South Dakota but since we went in October we stayed here. It was pretty quiet and relaxing. Sunday the 19th we went
to my Aunt Gloria's and had the big family T-day and it was fun and yummy! Then on the actual Thanksgiving day
we just went to Martha Stewarts.. Oh I mean my sisters and had this amazing meal that you'd expect at a gourmet restaurant,
all we had to bring is the wine, my kind of meal. It was just her family, mine and our parents. Her in laws
were there for a short time but for the most part it was just our immediate family and that was pretty cool. I love
my big family but it is also nice to just spend time with my parents, sister and our kids. Now my brother came to the
big one on Sunday but since him and his girlfriend just use family time for free alcohol they weren't invited on
actual Thanksgiving. Sounds bad I am sure, he would be invited all the time it is his nasty girlfriend who hits him
that isn't invited... oh ok.. TMI, I apologize!
us we are all well. Both girls have been healthy and happy. Lily is outgrowing all her size 5 clothes and I can't
keep up with her. She is growing at this high speed; I seriously hope she slows down and soon. Andi is getting
better with her vocabulary and shocked and embarrassed me when I yelled "shut up Hailey" to the dog and out of her mouth came
"shut up La La" (she calls Hailey, La La) I realized I really need to watch it around her. Lily is sitting for extended
periods of time now and doing really well. She has had a few big seizures recently and still suffers from the atonic
seizures (drop) and those suck but she is still on a slow but steady path of development.
Elmo obsessed and I am sure that is what her Christmas will be filled with, Elmo crap. She yells during Elmo's World
when they show Mr. Noodle, she screams "Elmo!" and whines until Elmo comes back. Poor Mr. Noodle, guy had a rough life,
died of AIDS and his memory is on Elmo's World and my daughter could care less, she needs Elmo.
November 20th 2006:
So after I had strep, Lily had a sinus infection and Andi had strep and an ear infection we are all on the mend.....
although Andrew just found out he now has strep. We will just keep him away from all of us so we can just kick this
thing out of our house for good!
We have been so busy lately and I fear it will only get worse as we move into December (can you believe it?).
I am in a play at chuch and my part is pretty big so that will pretty much be my life until December 17th (our last performance)
then we have Christmas!
The girls besides sick have been doing well. Lily sat with her new PT last Monday for 45 minutes! She was
correcting herself and just being a big girl! Andi is good and as stubborn as ever! I love it though, that kid
has personality! She loves to talk to everyone and loves to be the center of attention. I have NO IDEA who she
gets that from, considering Andrew and I am shrinking violets. Is that the proper way to use that term?
I just wanted to check in and add new photos! Check out the zoo pictures on both the girls pages and I added a
new one in the about me section.
Have a great Thanksgiving! It's my favorite day! No pressure of gifts and time well spent with family....
and lots of turkey skin! (don't even tell me how bad it is, I don't care!)
November 8th 2006:
I realize it has been a week since my last update so I thought I would log on real quick to say how things are going.
Lily had her allergy apt. on Friday to go over her labs and they said she is only allergic to feathers and has a very
slight allergy to milk but not enough to take her off of it. So who knows. She also got a flu shot which was not
very much fun for my poor girl, she was very sad. The Dr.'s best guess was that she has had a constant cold. I
don't know if I believe that and I am still so mad about the last apt. with the ENT I haven't decided which way to go.
I just wish we could know why her dang nose just runs and runs and runs......
Lily has been having a lot of drop seizures lately that make me mad. I know she is doing better not having the
big ones but if I am having her stand she will just fall to the ground, or she'll hit her head on the table during dinner,
it is sad. I just don't understand why we can't just stop her seizures. I am glad she doesn't have the big ones,
I am very grateful to not be where we were but I just wish we could get it all under control. Otherwise beside the cold
we all have right now we are fine.
Andi is good. Full of character and very cute. She has been extremely loving lately and it just fills my
heart. I wish I can figure out how to get a picture from my phone to my computer b/c last weekend she threw a full fledge
tantrum for me at Target and I just stood there and watched her and took a picture with my phone. My sister said she
couldn't believe I was calm enough to take her picture and send it to her during the whole thing. I wasn't going to
give her the attention she wanted and I didn't care what the shoppers thought, I just let her have it out and then we went
on our way.
So this is short, I have to get to the store to help out so I better get.
November 1st 2006:
Halloween was fun! Lily had a party at her school and Lily was a Nascar driver, Jr to be exact. Andi was
her pit crew. I have some cute pictures I will post. The party was great as usual, her school is the best as I
always say. We decided to take the kids trick or treating just to a few houses around our neighborhood while it was
still light outside. It was my first time taking my own kids trick or treating and I was very proud. Lily's race
car was her wagon (that we used when she was a flower girl) that daddy "suped" up. Lily loved going for the walk in
the nice weather and Andi enjoyed walking as well seeing new things and visiting people. It was a nice experience.
Although after we got home and had kids trick or treating at our house Andi seemed to get spooked and she just needed to nurse.
She was rather certain about it and although we just nurse 2x a day usually I could tell she really needed that extra
comfort so I nursed her. After that she was fine and happy to answer the door with me again. Not sure what it
was but probably a mixture of everything. Some kids looked scary so I don't blame her. Anyway, it was a good time.
Andi found where I hide the candy so that has been a struggle but the good thing is she really just likes playing with it,
she hasn't eaten a whole piece of anything. Lily would eat it all if I sit there and feed it to her. Her favorite
is the reeces pieces. My kind of gal!
We have the allergy Dr. apt coming up so I will report on that.
Oh and Lily had her first teeth cleaning on Monday and she did ok. She was pretty pissed but they got in there
and cleaned them anyway. They said I am doing a good job with her so that made me proud! :)
Oct. 27th 2006:
to drop a quick note and say hi!
We are all
well; finally over whatever we all got a few weeks back and on the road to healthy.
Lily is doing
well, her seizures are under decent control and she is doing great in school.They
even say that Lily has been helping hold her spoon and feeding herself.I wish
she'd do for me, what she does for her teacher, that Lily.Lily went on a little
kid roller coaster last night with her daddy.I think she enjoyed it.Andrew had to hold her head b/c it was pretty bumpy but she likes to play rough.She is getting bigger every day and just looks so mature and beautiful.
is well, crazy as usual but well.She is so funny and makes us laugh all the
time.She is talking up a storm, just wish we knew what she was saying!She still wants to be naked all the time and I let her, it is her dad who doesn't
like it so much.I guess daddy thinks I am too easy on her but she is my baby.This is how I know he thinks I am a softy:
Andi you want to burn down the house, ok, that is so cute" said in his mommy voice.
Have a happy weekend
and safe Halloween!
Our daughters school, The Foundation for Blind Children, is having their annual raffle that is similar to the St. Joe's
Health and Wealth Raffle. The tickets are a steep $100 but the grand prize is a 2007 Cadillac Escalade! But
even if you do not win the incredible prize you should be happy to know that hundreds of blind and visually impaired children
will win with your tax deductable donation! Our daughter Lily has severe special needs that also includes visual impairment.
The FBC has been an amazing source of help and support and gives our daughter the best learning environment there has to offer.
With donations like this the school can continue to thrive and offer what they have offered us for many years to come.
I know it is a lot to ask but just check out the site and see for yourself! Or you can visit Andrew and me at Lifetime
Fitness in Gilbert today, Sat the 21st from 10am to 2pm, we will be selling those tickets!
Hey there! What a busy weekend we all had! I am actually glad it is Tuesday and I am relaxing at work.
I know, sounds weird but seriously some kid free time to be on the computer is very welcomed.
Saturday I had to work at the store and our new nurse needed more hours so she came at 9am to bathe Lily and feed her
lunch, Andrew took Andi with him to drop some supplies off for his guys at work and then at 12pm he brought Andi back, the
nurse went home and Miss Maria watched the girls from 12pm-6pm. I got home at 5:45pm and got Andi ready and our
nurse came back to watch Lily while I took Andi to watch my niece in a lip sync contest. I would have taken Lily but
I could only got for 45min and unfortuantely it is a lot of work to take both girls and with a time crunch it is almost not
worth even going. Anyway, nurse came back and watched Lily, I got home at 7:30pm and the nurse brought her 16 yr old
daughter to watch Andi and I had to leave again to see our clothes (from closet a la mode) in a fashion show (it was a charity
event called catwalk for a cure). I couldn't get the clothes back until 10:30pm and with freeway closures I didn't get
home until almost 11:30pm! Andi and Lily were both sleeping away and I went fast to sleep as well.
Sunday was pretty crazy as well, I took Lily to church with me while Andrew took Andi to his friends house to watch football.
After church Lily and I went to someones house from chuch to watch a play on DVD that I will be in this Christmas. After
that I picked up Andi and we went to a birthday party for Lily's friend from school. The party was at Lily's school
and the girls had a blast. I enjoyed watching them play. That school is the best! What school opens their
doors on a Sunday for a bday party? They are THE BEST! Plus it is a safe environment with things that Lily can
do, like swing and lay on mats. Andi of course had a blast getting into everything. Lily enjoyed a big piece of
cake and some ice cream and we think the bday girl and her parents liked the shirt we got her (the same as Lily's) it says
"Ok I am Perfect, Now Stop Staring. Anyway, we were tired and went home around 5pm and called it a night.
Yesterday was just as packed full! Lily had a neurologist apt. at 8:30am in Phoenix, about a 45 minute drive from
home. We saw our old neuro, Dr. B and it was so good seeing him again. He wants old records and is happy to start
seeing Lily again. After that we went to my office to kill time before Lily's new PT apt. The new PT is very nice
and the facility is awesome! It is an old house that is just the best thing I have ever seen for special needs children!
Andi and I played on the large playground outside while Lily worked hard. After taking a kicking and screaming kid out
of the playground we went to the store to eat lunch and then after an hour there we were back on the road to Phoenix for Music
Therapy. Thankfully Andi slept that ride and Lily did excellent during that therapy! She is so cute! Andi
screamed all the way from MT to the allergy Dr. and we were early and Andi was very much all over the place in the waiting
room. The allergy Dr. whom we really like said that the lab didn't take enough blood so we only got the outside allergy
test and she only came back positive for feathers. That is so random. Anyway, we now have to go back to the lab
and follow up in two weeks for the results.
Phew..... I am sure that is boring to read and exhausting to write and relive. So needless to say a little quiet
time at my computer is so welcome. I just should get to work and stop blogging. :)
October 12th 2006: Here is screenwriting at its worst: Me: (loud sigh) Hands on chin, sad face You: “what’s
wrong, lil buddy” Me: “Oh this has been a rough week” You: (concerned, hand on shoulder) “why,
what happened?” Me: “Oh well you see we went to South Dakota to visit family which was nice until my whole
family got sick, then we had to fly while sick and that sucked” You: “that does suck” Me: (annoyed)
“I’m not done” You: (apologetic) “Oh sorry” Me: “We all stayed home on Tuesday,
sick and sad and I was trying to work from home trying to finish up the most annoying audit in history and the kids weren’t
into me being on the computer” You: “ooh that does suck” Me: (extra annoyed) “still not done” You:
(embarrassed) “Ok, sorry” (zips lip) Me: So I have a huge desk top full on Wednesday, I had to finish payroll
by 1:45pm, keep answering annoying emails for audit, pick up Lily at 12:45pm from preschool, take her back to work, head to
Dr.’s office at 2:10pm and I have to be done with payroll before I go. You: “how did that go?” Me:
“Not well, you see I was not done with my payroll by the time the Dr.’s apt. comes around but I tell myself I
can make it back in time to finish and still make it home by 4pm to meet new nurse” You: “and?” Me:
“That did not go as planned. You see I arrive at 2:10pm for Lily’s apt with the ENT and we sit until 2:50pm
when we finally get called back, we wait, wait, wait… at 3pm (my deadline for payroll) I call the office and have back
up help me out, I wait some more, and some more, by 3:25pm I realize if I don’t leave now I will miss the new nurse
so I open the door and walk right out.” You: “did you tell anyone?” Me: “there was no one to
tell, I just marched out, saw no one in sight, I did mutter rather loudly when they called a little boy back when I was walking
out the door, good luck at seeing the Dr., I am not sure anyone heard me.” You: “so not only did you not see
the Dr. you wasted your afternoon” Me: “yes” You: “that does suck” Me: “yup”
(hand on chin, slumping) You: “how’s the new nurse?” Me: “great, I think she will work out great!” You:
“did you see Dancing with the Stars last night?” Me: “just bits and pieces but man that Mario Lopez is
October 3, 2006
So my friend Wendy
tells me about a new book being written called Chicken Soup for the Special Needs Parents Soul (something like that) and they
are looking for entries and she thought I should enter.She knew that was right
up my alley and she was right.
of you who do not know who Wendy is let me explain a little about my dear friend.When
Lily was 7 months old I started searching the web for info about seizures and cortical visual impairment and I found a board
of parents that supported each other and I saw a post by Wendy talking about her 8 month old acting exactly like my Lily,
seizures, delayed, visually impaired and I said “oh my gosh, someone like my Lily!” and I posted to Wendy, please
email me and from there we have been emailing daily.We went through the same
things at the same time.Her up days were usually my down days and I would cry
on her virtual shoulder and I like to think my ups were on her downs and I was able to help her as well.I have talked with parents with kids who have “been there, done that” but going through those
“there’s” and “done’s” with someone is very comforting.2.5 years ago Wendy challenged me and said she would visit me IF I ran a 1/2 marathon with her and I said “ok”
although I had never mastered more than one mile in MY LIFE!She held her part
of the bargain and I did as well.I got to visit them in their hometown of Nashville
a month later and although we haven’t seen each other since then we still email and call and send gifts on birthdays
and Christmas.It is funny, I can’t believe the friendship I have formed
with her and most definitely consider her one of my closest friends even though we have only met in person a couple times.Recently her little Langan started taking her first steps and I cried tears of joy
for them and when she sent me the video it become part of my daily routine.I
have to watch Langan walk.Wendy has been one of Lily’s biggest supporters
and I feel like I am one of Langan’s.
I guess I wanted
to explain to you all who Wendy is and what she has done for me so when she says “you should do this” I really
respect that and really want to do it.
I decided on the
topic of acceptance because that is where I feel I am at.I really do and although
I have only had one really good session of “free time” to work on this I feel like I am getting somewhere with
this.Well wouldn’t you know right when I start writing about acceptance
not only do I get one blow but three blows in less than a month that makes me think I need to take the whole thing and hit
delete because maybe I am not ready to preach about acceptance.
First of all I
am grateful that the state of AZ pays for diapers for children over 3 that need them, I do not expect pampers but when the
cheap size 6’s were leaking badly I said she needs something bigger and they met my needs but the sight of these Medium
Youth Diapers turned my stomach.They are so big and it just made me realize
she isn’t a baby.She isn’t in cute diapers she is in youth diapers
that say I am a special needs person that cannot go the bathroom in the toilet.Those
hit me when I least expected to be hit.
was this Sunday.I volunteered to lead Children’s Church for ages 4-6.I like the older group but I wanted to be in Lily’s class.I had a couple out of control kids that were giving me a hard time the entire time so when I told another
child to sit across Lily and the out of control child said “eww”
I was crushed.I told her very sternly that although Lily cannot talk she can
hear and that hurts her feelings and that I am her mother and I can talk for her and you do not disrespect her or me.I think that is the just of it I was so upset I don’t remember my exact words
but I was proud of my composure although my lip started to quiver I did manage to calm myself and finish the session but my
heart was broken.I mean to hear a kid call my Lily “ewww” well you
might as well take a sledge hammer to my big toe b/c that would hurt way less.My
16 year old niece, Ariel, was helping me teach and she got very upset as well and had to scold the same child later who was
still just acting up and she listened to her better than me.I think Ariel would
be a great teacher, she just laid down the law with her but I knew it was b/c she was mad at the comment made about Lily earlier.
if that second one couldn’t be worse we had to go see the neurologist whom I was glad to show him how well she was doing.Less seizures (not gone but less) and she is sitting unassisted for up to 10 minutes.She is vocalizing and her vision is much better but when I said she can sit he says
“can she crawl?”, “can she stand unassisted?”When I
ask about people asking if she is autistic he says with the severe mental retardation that she has she is highly likely to
have autistic tendencies.Then since Andi was with us he said aren’t you
glad she is like she is.Yes I am glad Andi is like she is but you know what
I am glad that Lily is like she is as well.I was just so upset, I felt like
he was talking about her like I wasn’t her mother.Like I was disconnected
to her, she is my daughter.I am not her foster mother; I am not her advocate
(I am but her mother first).I hurt when you talk to me like that.This is why I am switching neuros.He could be the best of
the best but you know what, I take a nice bedside manner over his pedigree any day.
So here I am thinking
am I really ready to preach acceptance when I can’t handle the size of diapers, rude comments that will happen our lifetime
and rude doctors?But then again I think I would not be human to not be hurt
by these things and just because I accept Lily doesn’t mean my “mommy heart” won’t be broken from
time to time so yes I am and I will.
Sept. 28th 2006:
Lately Lily has been crying excessively when things don't go her way. Say she wakes up crabby or Andi hits her,
not hard but Andi has hit her. Andi gets scolded and Lily cries. When this happens we cuddle her and tell
her it's ok and she just cries and cries and cries. At first we are like "oh Lily are you ok?" we think she is hurt
some how but we are slowly realizing this is behavorial. How do we know this? Well on three seperate occasions
Lily has woken up crabby and just cries and Andrew put her rocker chair back and looks at her and sternly says "Lily
you are ok, stop crying" and three out of three times she has stopped! So although Andrew hates me telling people this,
he thinks it makes him sound mean, this is an awesome step for Lily. She understands dad means stop and she does it
and it also means nothing is wrong with her, she is just crabby.
I am proud of Lily and think this is so cute. I have yet to be stern with her about this but I will.... some day.
Sept. 26th 2006:
Lily went to the allergy dr. on Friday. I really liked her. She gave us some samples of allergy meds and
she had to get her blood drawn to check what she is allergic to. She is still on the antibiotics for the sinus infection
so we will wait to see if the meds at night are helping b/c she still has a lot of crap in her nose. She had a fever
on Sunday and was sad but she was over it by Monday so who knows what is going on with her.
We are having problems with Andi and keeping her diaper on. I usually let her run naked but lately she is going
potty anywhere and everywhere and this is not a good thing. Let's just say the stereo speakers no longer work and if
I have to pick up another piece of her poop I will go crazy. She doesn't say "poop" until after the fact so I don't
know what to do with her beside ducktaping on her diaper. Andrew gets mad at me for letting her run naked and he thinks
I never scold her. His new joke is "oh Andi you want to set the house on fire, ok, that is so cute" in his Kim voice.
Let's just say I am annoyed with everyone but Lily right now.
So I called
into the ENT about Lily's yucky nose and he called in an rx for antibiotics. That kid has been on more antibiotics lately
than anyone else I know. He thinks it is yet again another sinus infection. She saw the eye doctor yesterday for
a one month post op and he says she still looks good. He said there was some misalignment but all considering she still
looked good and he was happy. She was asleep during the whole apt. and he is so sweet he just did what he could with
her sleeping and said we can come back in two months. On our way out she woke up so I turned back around and he examined
her awake. She is so silly. I tried everything to wake her up during the apt. but nothing woke her up until I
wheeled her out of the room.
I am taking her to an allergy Dr. I am so tried of this runny nose, I know she has to have some allergies. This is not
normal to have a constant runny nose.
have no nurse. The one who was going to start last week who I was unsure about cancelled on me and
the nursing company has yet to call me to tell me that they have someone, no one….anything. I called upper
management to see if I can get anywhere there. I may just have to go for broke and hire someone and pay out of
pocket. That with Andi's daycare that charges me full time for her going part time may just put a real
hurting on us.
sounds like a venting post today. I will share a cute Lily story so this can end on a happy note.
the 9th we went to church and we sent Lily to Jr. Church since she is now 4 she is able to go. My niece, Skylar, took
her so I was comfortable with her going. When I picked her up she was very happy and the teacher (who has known her
since birth) was raving how well she did. I guess they were playing thumbs up seven up (or whatever it is called) and
someone picked Lily and they would ask Lily "did so and so pick you?" and she would shake her head no, (she always shakes
her head side to side, I am not convinced it is for no but whatever) then they said "did so and so pick you?" and she shook
her head no again so then they said "did Jacob pick you?" and she didn't shake her head and that is the boy who picked her
so I guess she won the game. It was even funnier when ultra competitive 9 year old Skylar said “it really wasn't
fair b/c Lily had her eyes open.”
I got some
sad news today. A little boy's great-grandmother in Lily's class whom has raised him pretty much from birth has
passed away. She has been battling cancer for years but it seems like she has lost the fight. I am just heart
broken. She has been a huge part of my "recovery". I met this group of moms/dads/grandparents when Lily was a
year old during something called infant group at Lily's preschool. We would come every Monday and we would do a group
with the kids then we left the kids with teachers and us parents met, talked, shared, ate, cried, laughed. That first
year I met all these people my life changed. This was my first step in acceptance. I learned I wasn't alone with
a special needs child and we all learned from each other, and grew because of each other. As the years gone on we knew
Kay was sick on an off but she still took amazing care of Amari so it made you forget the severity of it all. By the
time our kids got into preschool our time together was more for fun then as a crutch. I didn't need these people the
way I did two years previous. I accepted Lily and didn't need the support the way I did in the beginning. We started
seeing less and less of Kay last year and by summer program I heard she had Hospice in her home. Amari was still at
her home when I was asking this summer so again I still failed to see the severity of it all. I told the other moms
we needed to do something for her. Bring her something, visit her. Our intentions were good but failed to put
into action b/c of life. It is such an awful statement to be made but life was busy and we never visited and today Lily's
teacher called to tell me she has passed away. I am just sickened. She was such an amazing woman. I understand
she is now at peace. She knew where she would spend her after life and I know we need to be at peace for her but I can't
help but think of what a loss here has been left. A sweet 4 year old has lost his comforter and provider. I know
Amari is what kept her on this earth longer than she was "supposed" to be it is just too bad it couldn't be longer.
rest in peace dear sweet Kay. Grandma to us all.
So I am learning
that I need to write all my entries in word before typing it online b/c I can’t tell you how many times my entries have
been deleted and some times I feel like throwing my computer across the room but today I feel like just laying my head in
my hands and not writing.It is the latter that is more depressing.
I will start over
b/c it was important stuff about my kids that I was mentioning and I do have some time on my hands.Time I will not have later today.
Lily is doing well
except for she still has a constant runny nose just out her right nostril and it is thick and yellow and it makes her breath
stink.It is nothing brushing her teeth does to help, it is in her throat.It is a stinky nasal smell.My dad has
bad sinuses so I know that smell.Stinky!My dad is worse though, his is sinus and coffee…. Sorry dad.
Anyway gotta call
the ENT and see what he thinks now that her swallow study was perfect.She still
has the occasional noodle come out of that right nostril as well so something is not right.Why can’t she have just one normal problem that can be fixed?Why
must we stump every doctor we come within arms reach with?
On to stumping
Dr.’s, we got a call back from Dr. Haas’ office in San Diego who I left a message with and they said every single
test, blood samples, skin sample, muscle sample have all been negative she has absolutely no sign of mitochondrial disease,
no retts, no anything.He’s stumped.
On to more stumped
Dr.’s we are going back to our old Neuro that we really liked.He saw my
niece for migraines and he remembered us really well and was asking my sister about Lily so I thought he was so good at diagnostics
and actually cared so let’s give him another go.Our current neuro has
yet to do one diagnostic test even though I have asked several times and we have been with him for 2 ½ years now.Time to move on (again).
We are still struggling
with finding a nurse for Lily.They sent someone over for a consult and they
told her different days and hours than what I requested about 20 times and it wasn’t a great match but since we are
in a tough situation I told her to come on Friday and we will see how it goes.I
am so sick of tripping all over red tape with this nursing situation.What I
need to do is get rid of Andrew’s truck and then get a nanny.I doubt that
will go over well but it is what I want to do.
about Andi, she is crazy!What a character, man!She is currently obsessed with “Row, Row, Row Your Boat” and she wants to hold your hands while you sway
her front and back. She wants to Row with Lily in the car, with her dogs and
with her stuffed animals.She has the “Row, Row, Row Your Boat” down
pretty well but it is the “gently down the stream” part that she could use more practicing. It is pretty cute though.At music therapy this mom was telling
me about her 15 month old and her 20 words and I said I have an 18 month old at home with her dad and she says “how
many words does she have” and I said “a lot”.I have no freaking
clue.What does she sit there with a notepad and count the words the kid says?I can see counting 5 – 10 words but c’mon 20?She said she actually counted the words; I don’t have time for that.Anyway also big news on the Andi front, she is now saying “poop” and running to the toilet.She wants her diaper off and lifted on the toilet.She will
grunt and try to poop but after two seconds she is done.She has yet to actually
get the deed done but we figured we better get her own toilet last night at Target and she likes it but hasn’t actually
used it.I don’t really think she is ready, she is too young but I like
that she is taking the lead in this and I can follow b/c I am no expert. I am
changing diapers on a 45 lb 4 year old so yeah Andi get to it.I’d like
one in diapers much more than two.
Sept. 6th 2006:
I am back
from my long trip away in NYC! Although I do admit to a wonderful time, I really missed my family! I could not
wait to get home and Tuesday was spent very homesick. I think we should have gone home on Monday and I would have felt
better but I am home now and back to work and very busy!
in school right now. Andrew is meeting her off the bus today for me so I can work. Since our favorite nurse Mrs.
Char is now off for maternity leave we are scrambling. I did put in a request in JULY to tell them I needed someone
in Sept. and was someone there today, NOPE! Now after letting them know it is imperative that someone starts coming
or else we are switching companies they said they have two new nurses who we will interview and we should have a new steady
nurse starting next week. Cross your fingers that is the case. I am not much for confrontation so I would like
this to go smoothly and we find someone very complimentary to Lily. I know no one will ever be equal to Mrs. Char but
we are hoping for someone Lily will grow to love as well as us.
well with out her mama and had fun with grandma and daddy. She was so cute when I came home! I didn't dry up like
I thought I would and she of course wanted to nurse so I let her but she wasn't so interested and I actually got her to sleep
without nursing, a first for me and she didn't want to nurse this morning so maybe we are going to be done soon. I am
so ready to be done!
blog about my NYC trip when I get a chance so I don't bore you who are interested in my bug and not my random ramblings.
I am home
and glad! I will not leave my kiddos again for quite sometime. That is the truth!
all going to South Dakota for our new baby niece Avery's baptizism on Oct. 6th - Oct
9th. Should be a nice time to go. Not too cold! Can't wait to see that new baby girl!!
August 30th 2006:
I've got a 4 year old! What? When did that happen!?
Lily had a great 4th Birthday Party on Sunday. We had probably over 30 people and she got a lot of great things!
What a special, loved little girl!
I left for a buying trip in Vegas Monday morning and missed Bug's big day but I think I took it a lot harder than her.
I was pretty bummed. She had her swallow study which apparently she passed with flying colors. They told Andrew
that for a kid with such severe delays she swallows extremely well, although that is good news it tells us absolutly
nothing about why she has food come out her nose and why she has a constant runny nose. We will follow up with the ENT
to see what else he thinks.
Andi did extremely well while I was gone and surprised us all! I tried to pump while there but had a hard time
so I got engorged and thought I would nurse when I got home but Andi didn't ask until bedtime. I did let her nurse for
a couple minutes and then she was out. I think this is a good time to wean her since I will be going to NYC on Friday
for 4 days. Although she asked this morning I distracted her and she forgot all about it so I think this will be an
easier transition than I thought. I think the hardest will be bedtime, I have to figure out some other way to get her
to sleep. It has always been so easy nursing her in the rocking chair but I think it is time to find another way.
She'll be 18 months soon, I have way surpassed my goal. I think I will miss it though but glad to stop. I guess
what you call that is bittersweet.
I have a ton of work to catch up on so I better go. I will post birthday pictures when I get back from NYC next
week unless I have some time tomorrow.
August 25th 2006:
So this was my due date 4 years ago! Crazy! Anyway, I think Lily is trying to put me into a mental institution.
She has been waking up at 3:50am for the past two mornings with no intention to go back to sleep! I can't go back to
sleep b/c she wakes me up yelling in her room, yes yelling. Not sad just a "come get me" yell. Thursday morning
I got her at her request and brought her to our bed. She was grrring, yelling and kicking. Daddy got mad and went
to the guest room. I stayed and got kicked in the head. We both feel back to sleep at 5:45am and Andrew brought
Andi into me at 6:15am. Fun times. This moring I let her just stay in her room but she still woke me up and I
was just laying there thinking "should I get her, should I not", "will she wake up Andi", "did I pay that bill?", "how can
I get that credit card debt down", "what will I do when I am out of town", "what will I pack", "what should I wear", "should
I take a credit card"..... seriously until about 5:30am that is what was going on in my head. I finally fell back to
sleep around that time and was awoken by Andrew bringing Lily into our bed at 6am. Ahh the joys of no sleep. I
have a headache and my hands are shaking from the caffeine.
On to good news, I sent Lily to school with cupcakes, they are partying for her upcoming big day! Tomorrow Grandma
Cheryl comes to town and Sunday is her party. Monday is her actual birthday and she has that swallow study that day.
Andrew said him and his mom can do it with out me so I will head on to Las Vegas as planned for a buying trip. This
will be the 1st (and last hopefully) medical procedure I will miss. I am nervous about leaving on her b-day, during
her test and leaving Andi overnight. Oh boy, that is a lot to miss and be gone for.
I will post b-day pictures next week!
Aug. 22nd 2006:
Today was Lily's first day back to school and all has gone well! We love that place! She is so happy there.
I put up a couple pictures of today. She is so cute! She looks so big! I can't believe in 6 days she
will be 4! 4!
Post Op Day 7 and new hair cut
Post Op day 3
Post Op Day 2
August 18th 2006:
Today is Andrew and my 5th anniversary! Wow! And they said it wouldn't last! :)
I posted some shots of Lily and her eyes in the healing process. She is doing fabulous. We hope it stays
that way! School starts on Tuesday and we so look forward to it. She had her IEP yesterday and we set some exciting
goals. I really think she will do well this school year. I am a little bummed she went from Freshman to Senior
in just two years but with that Aug. 28th birthday and Sept. 1st cut off I don't think we will be able to squeeze in another
year in at FBC so instead of whinning I will look to see what the best option for Kindergarden will be for her next year.
She has been having the big seizures every few days but she is having dumb drops that make her sad. I did not make
any changes with her meds. I am just not ready to add another med. She is so alert these days and I don't want
to take away from that. I will know when the time is right.
Andi is good. Crazy but good. Very talkative and last night she was singing. I thought 17 months is
a bit young to be singing but hey if she wants to be Jessica Simpson I am a-ok with that. Only thing not on her side
is a good singing voice. At least she has good looks going for her. That is all you need these days to get a record
August 15th 2006:
No internet connection at home so I couldn't update all weekend. Lily is doing great though and there is nothing
significant going on. Andrew got back and we are all glad. The girls were both very happy to see him this morning
and I am happy to have the company and support he gives me. I do not envy single parents. It isn't just the help
with the kids but the adult company is so much appreciated especially when you are with out.
We go to the eye Dr. today for a follow up. I am sure he will be happy with the results!
to do well. Her eyes do look their worst today. They are very red but she isn't complaining. We stayed home
yesterday but she is with her nurse today. I really think this surgery was successful, her eyes really seem to focus
better and they aren't wondering around like they used to. I really think it helped! I took a picture of how red
they are but can't post until I get home today. She is such a trooper, man that kid is awesome. I just love her
more than words can say. I just want to squeeze her. She lets me put the cream in there with out a complaint.
Sometimes I feel even worse when she doesn't complain. I just couldn't be more proud to be her mommy if she won Olympic
Gold at almost 4 years old.
to shout off the roof tops, I am the luckiest mom in the world! I have the best kids ever!
give Andi a shout out as well. Ever since her molars pushed thru she is a different kid. So much fun! She
hasn't gotten scolded in a long time! She knows when I say no I mean no and listens. She put two words together
the other day. "Pretty Shoes" so I had to buy them of course at Target. I have a picture to post of that as well.
She loves those boots! She says in her own way "what are you doing?" she says "what's that?" she says so many things
I can even think of them all to name. She is so amazing to watch her development. It is also amazing how different
she is when she is teething and when she is not. I sure hope those incisors wait a little while before they ruin our
starts Tues. the 22nd and so I am glad she is starting school with her vision seemingly in much better condition! I
am also glad to get her back in school. Home is so boring for her. Can't wait to get back to routine and see all
This is what we hope to fix
Post Op 8/09/06
Waking up, post op 8/09/06
Aug. 9th 2006:
We are home and Lily is well. They gave her some meds to relax her before the surgery and it kept her sleeping
much longer than usual after going under general. We actually took her home before she woke up. She has been up
for bits at a time then crashes back out. I gave her apple sauce and juice and that went well so I will give her some
lunch soon, when she wakes again. Her eyes are puffy and red on the inside corners but I hear they will get much worse.
She was upset awhile ago so I gave her some Tylenol. I hope that with lots of sleep will comfort her. She
is in my lap right now but 40 lbs of dead weight is numbing my arm and butt! We have to put cream in her eye every
day for a week, that will not be fun :( Poor girl. I really hope this helps. Andrew was very insistant about
this surgery always feeling that her eyes and seizures were connected some how. I am not so sure but if for some reason
it helps than that can't hurt, right?
Andrew is going to South Dakota for the Sturgus Ralley for a long weekend, we'll miss him. He is helping his parents
out at their campground that is VERY busy this week! They have a donation for Lily's school there and I guess a lot
of people are giving donations. Those big biker dudes always have the biggest hearts!
Thanks for all your support as usual.
Aug. 8th 2006:
So keep Lily in your thoughts and prayers tomorrow please. 6:30am we have to be at the hospital and of course she
will be with out a meal and probably not too happy so let's hope we get there and they take her back, everything goes
with out a hitch and we are home and she is eating and happy! Oh and seeing better! :)
I'll give you all an update tomorrow.
August 4th 2006:
So we scheduled Lily's eye surgery for August 9th already! That is this coming Wednesday. I am excited to
get this done for her. Although Wednesday is the only day he does surgery and of course it is my payroll day but we'll
figure something out. We have to be there at 6:30am! Yikes. I will have to wake both girls up for it.
Her swallow study on the other hand took almost a week just to get scheduled. I was very annoyed with trying
to get this scheduled with radiology and a speech pathologist. Anyway of course the only days they could do it were
the days I am going out of town so I just sceduled it for Monday August 28th (yes Bug's Birthday) and I will just catch a
later flight to Vegas for a quick buying trip. What can you do, kids come first. So we have a very busy August!
I will be going to NYC with my mom, sister and aunt Sept. 1st and leaving the girls for the longest I have ever left them.
This will be my first trip away from Andi and I have a feeling it will be very traumatic for her. Grandma Cheryl is
coming August 26th for Lily's b-day party and staying until I get back Sept. 5th so that is a blessing.
Have a nice weekend!
August 3rd 2006:
So good news and bad news. Good news is the eye doctor says Lily's vision is improving and she would benefit from
surgery. We are going ahead with it and it should be in 6 to 8 weeks. She will have to go under but it should
be minimal pain and her eyes should be straighter afterwards and with straighter eyes she will see better. Plus her
beautiful blue eyes will look even more beautiful when they are both looking in the right direction. :)
I am still trying to schedule the Moderate Barium Swallow Study the ENT recommended. I called the study place and
they said I had to call the Speech Therapists and left 2 messages with no avail. I will keep on it.
Bad news is Lily is having a tough time with seizures once again. The sucky thing is I don't know how long she
has been having these problems b/c I found out she is having them in her room at night. I think this could be an explaination
for her being tired all day long. I came into her room last night at 9:30pm, she went to sleep at 8pm and she was seizing.
I can't imagine how often that is happening with out me knowing. Poor bug. She is so tired through out the day
but she has a hard time sleeping b/c she has jerks when she starts to fall asleep. I guess I need to make a call to
the neuro. I just didn't want her back on three meds but I think I am left with no choice. :(
That is my update for today.
July 27th 2006:
Quick update on the visit to the ENT yesterday. I just loved the Dr. he was very gentle and kind. He spoke
to Lily and was concerned and of course stumped with her. He didn't understand why now food would be coming out her
nose now as opposed to since birth and why just one nostril. He asked if he could do a quick test where he puts a scope
down her nose and I agreed and she freaked out. She screamed like I haven't heard in a long time and that was hard to
watch. She bled when he was finished and he said it was very inflammed from food being in it but there is no structural
damage. We now will take her to the hospital for an outpatient study called a Barium Swallow Study. I am sure
she will love the thick liquid but it will be a good way of finding out what the heck is going on with her. I think
the Dr. will do all he can to help us out with a dx in this department. Unless it is like everything else. Undiagnosable.
I will keep you all up to date!
July 26th 2006:
So Cierra went home on Monday :( We had a lot of fun with her and were sad to see her go.
Saturday we drove about 90 miles north to my aunt and uncles in a small town called Strawberry. They had their
40th wedding anniversary in their back yard and they had a dance floor with a DJ. During the day the girls played
in a jumpy thing and Andi was in heaven with all the apples on the ground and eating cherries off the trees. Although
it was warm there, in the 90's it was a lot cooler to us so we stayed outside all day. The girls were both in great
spirits all day long and they even danced on the dance floor! Ariel and Cierra took Lily out on the dance floor and
danced with her and Andi was entertaining everyone with her silly dance moves. It is amazing how dancing is just an
automatic part of development! She really can move! During a song called Crazy by Gnarles Barlkey Lily just started
really moving, she was clapping her hands, kicking her feet and just dancing up a storm! It was the cutest thing in
When we got back to the B&B we were staying in both girls crashed out hard! I stayed up reading until the power
went out and then I was just laying in the dark waiting for everyone else to get back from the party. I left early for
bedtime. We slept pretty crappy that night but the next day we went to a little creek and we all went swimming in some
cold fresh water. That is the best thing in the world, swimming in refreshing natural water. I can't tell you
how much I enjoy that. It was a lot of fun! Cierra was supposed to go home that day but since we were swimming
we extended her stay an extra day. I wish we could have extended it more but it was time for her to go back.
Anyway, we had a fun weekend. Andi has one molar left to go of her one years and it has been very rough to say
the least so I will be happy to get my baby back.
July 21st 2006:
So I am
tired in the morning, I am tired at night. I like handing food to Andi and letting her take care of herself. She
feeds herself, she drinks all by herself. She tells me when she wants more, she tells me when she is finished.
She can eat in the car on the way when we are late. Feeding Andi is convenient for a fast lifestyle. Lily on the
other hand takes time. Feeding Lily means stopping what I am doing, taking time and stopping. Every bite takes
minutes. Medicine with a few bites. Tricking her with pudding and veggies every other bite. Giving her drinks
in between bites. Making assumptions that she wants a drink. Assuming she is ok with the meal I have prepared
for her. Knowing that she would prefer meal of pudding and yogurt but knowing she needs protein, veggies and not too
much sugar. See feeding Lily is always something I have to do. It is something I rarely look forward to doing
but the minute I am finally seated and feeding her I am happy, content and quietly thankful that I have to feed her.
Lily makes me take time to slow down. She makes me so happy just to see her happy with every bite of dessert, which
she gets with every meal. She makes me happy to watch her clap her hands while eating her sweets as to say "more mama,
more". Without Lily I would probably have an ulcer already. In a rush rush world I actually am allotted a "time
out" at least 2 sometimes 3 times a day. (Not that I don't feed her 3 times a day, she is with someone else a lot of
times during lunch time, no need to call CPS)
July 18th 2006:
So things are going well at our home front. We still have Andrew's cousin Cierra with us and she is so much fun
and such a great help! Too bad we can't have her help all the time! My niece, Ariel, and her get along real well
so we have had several sleep overs and it has been fun! Andi loves all the extra attention and Lily is loving all the
extra cuddles she gets!
We all went to Big Surf (water park) on Saturday with my friend, Nicole, and her boyfriend and she brought her little
sister who was also in town and so all the teen girls had a blast and amazingly my girls had a great time too! I think
Lily had one of the best days of her life, she was in amazing spirits, she smiled all day and was very hyper. Only thing
she did not like was us dropping her down a water slide, that she was not a fan of and cried for at least 10 minutes afterwards.
She did however like going down the slide with dad on his lap. Just no slides by herself we learned! :)
So things are going well. Lily is having those seizures again when she wakes up but none any other time of the
day and strep is all gone.
Andi is getting 4 molars right now which is miserable and I wonder sometimes if all I have to look forward to is the
terrible two's, I am in big trouble!
July 14th 2006:
So I got strep again (!) and my Doctor told me to get my kids tested so we can quit passing it around. I thought
they did not have it but to be sure we took them in and sure enough they both have it! Lily who never complained once
had it the worst and Andi who acted a lot more sick barely had it. Oh boy! Oh well, we are all now on antibiotics
We have Andrew's cousin here to visit us her name is Cierra and she is from South Dakota. She is almost 14 and
great with the girls so we thought it would be nice to have her help us out down here while Lily is now out of summer school.
Lily had a Luah yesterday which was fun! She was so cute with her lei. She was in a very good mood and super
cute. Our ped rx Miralax for her to help her potty better since she has been having a rough time so we will see how
she does with that.
I hope you all have a great weekend!
Oh I saw a movie with my mom, first one in a long time! The Devil Wears Prada! Amazing! I loved every
second of it! Two thumbs up! Go see it!
July 7th 2006:
did awesome until we came back home. July 4th she had 2 seizures, she hasn't had two seizures in one day in months!
I decided to give her an enema because she was having a hard time pooing and she has been better ever since. Maybe it
is connected, I am not sure but whatever.
home with a nurse today, a new one since our favorite nurse Char went on maternity leave but the new lady seemed nice.
at daycare today. Friday's are the only day I work all day. I spend my morning at my office job (payroll) and
my afternoons at the store (closetalamode). Tomorrow I have to work all day at the store and we have Miss Maria come
and watch the girls. She is from Andi's daycare and Andi just loves her and she is good with Lily as well so we trust
her and like her a lot.
that is our boring update. Lily's last week of summer school is this week so we will be scrambling for help the next
month. Hopefully we can get some more nurses in. This new lady is moving to the west side so she is just helping
out, she is not permanent.
up new cute pictures**
July 3rd 2006:
Updating from Greer, AZ in the white mountains. We have been here since the 31st and have been just relaxing in
the cool weather and enjoying the great wide open. My mom got me a massage and facial yesterday and I feel like a new
woman. I fell asleep 3 times! I have never fallen asleep during a massage before.
Lily is doing fabulous, after Thursday's scare she has been awesome! She has been happy and healthy except for
a runny nose. She is sleeping well and just doing great! Andi is doing well as well but not sleeping so well.
If the kid sleeps in the same room as me I swear she can smell me and wants to sleep on top of me. She hasn't been nursing
all night like I feared she would but she sure won't let me not touch her. Amazing how she sleeps the entire night in
her room but wakes hourly with me. One more night of this and we are heading back home to our beds! Worst part
of vacationing is sleeping situations.
I totally forgot to mention that I am an aunt again! I am so excited to welcome to you all Avery Lynn, little sister
to Ayden and daughter to Andrew's brother Josh and wife Carrie. Congrats you guys, cannot wait to see her in person.
I did get to see her on the hospitals website so that was cool but nothing like seeing and holding a newborn!
Well I hope you all have a safe and happy 4th of July! We will be driving back home listening to the screams of
Miss Andi Jane and probably all sleeping by the time the fireworks start going off but whatever, we have had a great relaxing
weekend so it is all worth it.
June 30th 2006:
The school had to use Diastat on Lily yesterday because she was seizing over 3 minutes and apparently it was violent.
She hasn't had one of those since early May so I am pretty bummed. I didn't see it and of course the poor kid slept
from yesterday pretty much until this morning so I haven't seen any activity yet. I am now smart enough to not expect them
to not come back but I just kind of always hope they don't. I mean she seizes every day just not the big violent ones,
those I like to stay gone. :(
going to Greer today until the 4th so that should be fun. It will be fun after we endure the 4 hour car ride.
That part pretty much sucks big time. Andi is not a fan of the car seat but what can we do? I wish you all a happy
and safe 4th! No drinking and driving! I mean it!
June 22nd 2006:
So I am alive again after Andrew and I got strep throat. YUCK! It has been 5 years since I last had strep
and man you forget just how crappy it makes you feel. Anyway we are good now and the girls escaped it so that is the
best part of all.
Lily is doing great in summer school. She is very happy and just so cute! She seems to have a seizure a day
and it is usually associated with nap time. At least they are a bit more predicatable so that does help.
Miss Andi Jane although is very cute she is learning the art of testing her mama and I am doing my best to react the
appropiate way and not fall into her little traps she leaves for me but in my moments of weakness I do yell and I am trying
my best to not do that but man that kid. She is hitting Lily while looking right at me just to see my response.
I am trying to handle it calmly and not freak but it makes my heart hurt to see Lily in the battle field. She doesn't
hit hard jut enough to be noticed. We are working on it though. Besides that she is very cute and loves to kiss
on the lips and hug. She loves to kiss and hug Lily as well as hit her so there are pluses to her minuses but aren't
those with everyone?
So besides the strep incident we are all doing well and happy! This Friday we have a wedding to go to which is
always fun then Saturday Closet a la mode (ahem plug, plug.... closetalamode.com) is having a Fiesta so I will be at work
Saturday then Sunday who knows maybe a little Home Depot to look at floor coverings, then maybe Bed, Bath and Beyond, I don't
know though if we'll have enough time.........
of you who read my blog know that I am volunteering at my church every night of the week this week and Andrew is staying home
with the girls but tonight he asked to come along with the girls and I thought, why not. After totally botching up my
skit I was in by some uncontrollable laughter, thank God the average age in the audience is 6, I let Lily go into the 2 and
3 year olds class and I had to practice for tomorrow nights skit and Andrew took Andi to the grass field to let her play and
when we came to pick up Lily she was in the best mood ever! She was shaking her head very happily and all smiles!
I was so glad we put her in the class and I got over my nerves of sticking her in a class with "typical" kids and she did
awesome! I think she'll come back tomorrow, let's just hope her mama can get her act together so she doesn't embarrass
her little bug!
June 13th 2006:
summer school yesterday and I think she is happy to be back in a routine. She was pretty bored last week home with mama!
dropped Lily off I met up with my nieces at Sunsplash (WaterPark) and Andi got her first experience with it. She was timid
at first but after an hour she was sliding down the slides and having a blast. We had to leave after 1 hour and 45 min
and go get Lily by but I think it was a perfect amount of time for her.
After I did everything in my power to keep her awake on the car ride home she crashed hard at home and for 2.5 hours!
Water park day everyday! :)
to be having silent seizures, if you could call it that, I don't know what else they could be, she tries to fall asleep and
then just screams and cries and loudly I might add. She will do it a few times before she crashes out. It seems
to only be at nap time and it really scares her. Her body doesn't jerk so it is hard to say if it is a seizure or not
but something is bothering her and making her sad. :( Poor buggers butt. Otherwise though she is doing great!
She makes me so proud; she is so happy and so loud about it all! She is never quiet unless she is sleeping and it is
so cute! :)
showing me all the good and bad things about toddlerism! There is honestly way more good than bad, she really is a
lot of fun. She is so hilarious with her words and actions. She likes to copy us and I adore her. I really
enjoy this age a lot and it makes all those hard infant times seem to disappear. Andrew has a friend with a 20 month
old daughter and he brought her over on Sunday and Andi and she played like monkeys, they were wild and had a blast!
I told her she could come play anytime she wanted. It was so cute and reminded me that I met my friend Chrystal when
we were only a year old as well and we are still friends to this day! :)
June 6th 2006:
Well I had a good
scare yesterday.Man, kids are freaking scary!So we were home all day after Lily had OT and ST, Music was cancelled so we were hanging out all day.After nap time I could sense the girls were antsy from being inside all day so I decided to venture to
the pool with both girls.We have a huge step that I was able to put Lily’s
bath chair on and buckle her in.There is enough room for Andi to play on the
first step as well so we were having a great time, splashing and Andi was learning 1, 2, 3 jump.She was counting with me in Andi language and it was so cute.Lily
was splashing with her legs and was very happy until she had a seizure that was rather big so I knew she needed to get out,
she had goose bumps and her lips were quivering, it was 110 degrees outside so I knew she needed to go inside and be wrapped
up and rest.Well Andi was still in her 1, 2, 3, jump mode and in no way was
she ready to get out of the pool but I kept telling her we had to get out because Lily was sad but she didn’t want to
hear it.I was holding Lily in my arms and trying to get Andi to follow me into
the house when she just stepped off the edge and went under the water, it was so scary, she just went under, I had a split
second to make a decision, I knew I couldn’t put Lily down b/c the concrete had to be over 100 degrees so I jumped in
with Lily in my arms and grabbed Andi, we were all under for what felt like forever but actually was only 2 seconds.We all came to the surface and I didn’t even think twice, I just held them both
and went straight into the house.I was shaking; every piece of me was trembling.I had banged my shin up pretty bad but the worst part was the image of Andi under
water.She had no chance in that water alone and it was the scariest thing.To know that if she were ever alone by the water which I vow she never will be but
we would loose her just like that.We have a secure fence that self lock so I
know she is safe but man; I don’t think you can ever be too safe.There
is so much that was left out in the parenting handbook I was never given.
Lily has to go
to work with me this week because apparently 3 weeks isn’t enough time for them to find someone for us.Ugh pisses me off so bad.They say only a nurse can watch
her yet finding a freaking nurse to watch her is impossible.I am thinking of
switching companies, maybe someone in the east valley.They say we have tons
of nurses in the WestValley, ok that’s but that does squat for me.Anyway, she starts summer school next week so that will be some what of a break.I just feel bad for her she gets bored laying on the floor at my work.
Just wanted to
share what is happening.
June 2nd 2006:
was Lily's last day of school. Her last bus ride until August. I was kind of sad. She will still go to summer
school there but the teachers are different and it just won't be the same again until August. You know everywhere we
go with Lily we get stares, pity smiles, false niceness but not at her school. At Lily's school, Lily is Lily.
They don't expect too much yet they also don't expect too little. They treat her like she is just a little 3 year old
girl and I just love that place.
ceremony they had the kids show us what they do in gymnastics and Lily hung from the bars and swung, with help of course and
the she rolled down an incline mat. It was so cute. The "seniors" got their diplomas and they ran a video with
the kids throughout the year with some nice music to go along with it. It was very sweet. I felt sadness though
for our friend Nathanial that Lily has known since she was one, he is moving on to Kindergarten and I have known his mom for
a couple years now and it is sad to have these changes. I don't want Lily to grow up and move on :( I know that
we have to fight to keep her there an extra year. You know her birthday is 3 days before the Sept. 1st cut off and so
they will say that she has to go to Kindergarten at barely 5 just so they won't have to pay for her another year at FBC.
she is home with our favorite nurse and will do that for a couple days a week for this month but then she is taking off for
maternity leave so we are hoping to find another nurse we love I hope at least close to as much. It is so hard trusting
someone with your child all day. It is a little more comforting knowing they are educated to handle seizures but there
is no degree in human kindness and that is what I worry about. Anyway, I sound like Debbie Downer today.
get back to work!
feel sorry for me"
I get told very often how so many parents read my story and realize what they have with their children and they appreciate
them more. I like those comments I really do. I think it is a great thing to appreciate our children for who they
are and all they can do BUT I just want to make sure no one feels sorry for me.
we brought Lily bug into our bed for awhile and I had her head on my arm and my body was curved into hers and I thought it
just doesn't get any better than this. I actually thought these exact words, "I don't want anyone to feel sorry for
me" b/c of what Lily can't do. I have the most amazing precious angel on earth and I am forever grateful and I just
had this huge feeling overcome me of happiness with Lily and not wanting a single thing to change about her.
what you have, yes indeed but please don't ever feel sorry for me.
May 25th 2006:
So I have
been a parent for almost 4 years now. I like to think as a parent you become an "expert" in the field of parenting but
when your first has special needs you tend to be like a first time parent the second go around with a what us parents of special
needs call a "neuro typical" child. Like the things that baffle me are when my 14 mo old (Andi) screams for me to take
off her diaper. I do and she takes her naked butt into the bathroom and squats and pees on the floor. Daddy tries
to put her on the toilet during mid flow and she freaked. So does that mean she does not want to pee in her diaper OR
the toilet? Isn't she too young to care?
about the fact that since she is still nursing why she needs both breasts exposed and why does she go back and forth to each
one. She has to lift my shirt and the one that is not being nursed from is being rubbed. It is a bit odd.
Luckily she only does this in the AM and before bed, hopefully we will stop this soon.
she need to be held at home and when we are somewhere she needs to be held for safety she doesn't want to be held?
how come she can understand most sentences yet the ones that have the word no in it she acts as if I am speaking Chinese?
this parenting thing is weird. It is also hard and frustrating at times but man it all seems to go away when she puckers
up and gives me a big wet kiss on my lips. I love those!
Lily I never knew "those" frustrations but I didn't get the wet kisses either to reward those frustrations. With Lily
my frustrations are with seizures and her body’s inability to work with her but my rewards are her gorgeous smiles and
her wet kisses that I have to steal and her cuddles. I may be no expert, I certainly don't know all the answers but
I seem to be managing just fine, I think.
So I fight
for those genetic tests to be done and they are done and guess what..... Normal. I was wrong once again. It isn't
that I wanted her to have Atypical Rett Syndrome but I wanted an answer and I thought that was it. My gut said that
was it and it wasn't. So I don't know where to go from here. I guess we just have to take it as we just don't
know why Lily is the way she is and except that at face value. I already except and love her as is, I just wanted to
know why and what and if we do decide to try for a boy what are the odds of this happening again.
On a lighter
note Lily had picture day and she looked so darn cute, I can't wait to see the pictures! Andi came along and got
in a few shots. Not so sure how those will turn out but I am excited to see them!
is Lily's last day of school but she will go to summer school. The only problem is there is no bussing for summer school
so I have to take her @ 9am and pick her up 1pm and try to work two jobs in between that time. I thought I would try
to get a nanny and use respite care thru the state for half of the hours and pay out of pocket myself the rest but the state
will only approve a nurse to watch Lily and we can't get as many hours thru nursing and I can't pay a nurse to watch her when
the state doesn't pay. So now I have to just do it myself. I thought the whole point of respite is to help the
parents out; this just makes things more difficult. The funny thing is they say respite is not for when the parents
are working, the parents should pay for child care while at work but find me a day care that Lily can go to..... Yeah right.
So it is a catch 22 that totally sucks. I guess I should just stay home, loose my health benefits, my car, my salary
and then have someone come watch Lily while I go shopping with my no money.
May 17th 2006:
to share a story from Monday at Music Therapy.
runs the waiting room wild, she tears the place up while we wait for Lily. There are the same people there weekly and
I get to know the mom/dads/respite care workers pretty well that have the same time slot as us and one mom there is the QUEEN
of Doom and Gloom. I think she feels that God took a dump on her by giving her an autistic child and whoa is her.
I usually entertain her sad little life while I hold my eyes still from rolling out of my head. Her son is austic and
yes I am sure that is a hard dx to deal with but guess what, it could be worse, suck it up and put your big girl panties on!
Ok back to my story... this is the same woman I mentioned months ago ruining the cute story about the Down syndrome girl cussing
at school, her comment was "I wish I had that problem". Well "Debbie Downer" was back in action on Monday when Andi
was in this other families face with a baby, she just wanted to touch the baby and I didn't want her touching someone's baby
(as I wouldn't want a strange toddler touching my baby) and she says "I am sure I am not the only one who would say they only
wished their child was that curious at that age, count your blessings". WHAT? HELLO? Did she just tell ME to count
MY blessings? Oh no she didn't. All I said was "I do, believe me I do." Ok lady your kid freaking walked
into this office. Your kid threw himself on the floor b/c he didn't want to go into MT. Count your freaking blessings.
Lily will go where ever and to whom ever I send her to. She gets rolled into the building in her freaking WHEELCHAIR.
She is telling ME to count MY blessings????? Ok Debbie Downer it is soooo on.
May 17th 2006:
So by accident Lily got weaned and taken off Lyrica. It is because of several mistakes made by the pharmacy and
us being out of town and not able to be home for FEDEX, anyway she has been on the Lyrica for over two weeks now and doing
just fine! The weird thing is the seizures she is having are the small ones, I think the are complex partial but
they aren't the grand mal (generalized) that take everything out of her. I never knew she had these but for some reason
she is now but they are weird and usually make her smile. I know strange. It must give her a good sense of
something. I also notice how much more alert and aware she is of her surroundings. She hasn't been on only two
AED's (anti epileptic drugs) in years!
She cries easier and I think it is b/c things she never felt before, she can feel and her senses are all new to her and
she has to relearn a lot but I think it is wonderful as well.
I know my goal is for her to be seizure free but I think I would rather deal with these small seizures daily and keep
her only on two meds. This is so wonderful. I know all too well the big nasties will be back but I also know
how to enjoy this time while it lasts.
Pre School is almost done for the year but only after a two week break she will be in a summer program at the same school
for a month and then she has almost a month off. I have to figure something out for her while I am at work.
Andi is doing well, adding a ton more words to her vocab and sleeping all through the night, only problem is she wakes
up at a quater to 6am every morning... yawn. Ugh, it isucks and the biggest part of it sucking is she wants to nap by
8:30am and if I have to be at work she is miserable at daycare until nap time after lunch. We have to figure something
Talk to you soon!
May 10th 2006:
I forgot to share what Andi learned while we were away! I have been semi concerned with her lack of speech.
She learned "Hi" at 10 months and I thought we'd have to enroll her in MENSA but then she never said another word and
I got worried but much to my surprise this past weekend she saw a dog, pointed and said "dog dog". Saw a ball and pointed
and said "ball" then she saw her cup and pointed and said "mine". Not so sure I was ready to hear mine yet but she said
it and hasn't stopped.
Speech has been the biggest milestone I have missed from Lily. The one I have craved the most, more than crawling
or walking. Talking. So as you can imagine after being a mom for close to 4 years and finally hearing some words
or communication I am very happy. I am so very happy. I am sad it isn't from Lily but glad to hear it from Andi.
May 9th 2006:
home and man are we beat! I thought a long time ago traveling alone was rough, was I ever wrong! Add two kids,
a wheelchair, two car seats, a stroller and our luggage and man you feel as if you will never travel ever again. Seriously.
I was grateful that the first flight, the one where Andi screamed (screamed, not cried) for 15-20 minutes straight was to
Salt Lake City, Utah.
I think were we headed to LA or Vegas the other passengers wouldn't have been so understanding. Two men told Andrew
he envied him that they had 5 children of their own and couldn't have handled the situation better. Two separate women
came up to me one telling me that their heart went out to me and one said "she really wasn't that bad". ThanksSaltLake passengers you really kept me sane. The second flight wasn't nearly as bad but then we had a 45 minute ride
to the campground that Andrew's parents own. We were beat when we arrived but Andi was crazy, she played until that night and was pretty good the second day but then came Friday night.
Cheryl (Grandma) told me to go out with Andrew and his brother, Jeremy, and their friends, I was hesitant but b/c the
girls were both sleeping I decided to go. Bad choice. We came back at and Andi had been awake most of the time coughing and crying. I felt like a huge jerk for being
gone. She was up most of the rest of that night and woke Lily up who was up most of that night as well. So come
Sat. the big grand opening with about 300 people I had two tired kids and I was one tired mama, I am sure I was a bit on the
rude side and felt real bad about it but Andi would not sleep that whole day and just cried and wanted to be held. Sunday
she spiked a fever and wanted to be held again all day long but at least she slept this time. We took my 15 year old
niece Ariel with us which was fun. She is quite the character and got along with everyone, people she never met in her
life. She was busting these guys’ chops and having a blast doing so. She fit right in the South Dakota way of life, busting chops. :)
to take her home Sunday, well to the airport so Grandma Cheryl got a chance to "take a break" and drive us to the airport.
After we dropped Ariel off, we went to Sam's Club. I didn't bring along Lily's wheelchair b/c I didn't know we were
going anywhere so we had to use one of those wheelchairs for adults, she looked so cute and little in it and I couldn't help
but laugh the whole time. Grandma Cheryl pushed Lily and made sure she stayed in the chair and I held sad sick Andi
while pushing, eventually pulling the cart. It was quite a day and we all went to bed early that night, well after Desperate
Housewives and Grey's Anatomy of course. Poor Grandma Cheryl and Papa Steve and Andrew were busy cooking steaks for
the ESPN crew that is staying at their campground for a turkey hunt that will air in a few months. I'll let you know
when it will air, you will get so see some of my in-laws! :)
finally Monday comes around and we are ready to get home. I was beat and not looking forward to the two flights but
both girls were angels and we were home by and all asleep
I was so
happy to get Andi back in her room in the crib and Lily back in her room. I love those kids but I hate sleeping with
them. Man, I haven't slept that hard in a long time!
that is my long update... I didn't mean to go into that much detail but I did.
enjoyed seeing Andrew's family. I really did luck out in the in law department and I am not just saying that b/c you
guys read this, I honestly mean it. Courtney and Ciara are awesome cousins to Lily and Andi and were amazing help.
Andrew and I both said we'd love to fly them out to have them help in the summertime. I wish we could have everyone
live in AZ, I love his family but I love AZ so if we could have it all together that would be the best!
May 3rd 2006:
Just wanted to pop on in before we head out of town. We are going to South Dakota for several days and will be
back on Monday. We are looking forward to seeing family and seeing the new campground Grandma and Grandpa Nothdurft
made from scratch!
Lily is doing fairly well. The pharmacy messed up something some how and she is hasn't gotten her new med Lyrica
but she seems fine not getting it so maybe we will stay off it. She is very happy right now. She is still on the
antibiotics and still seems to have issues with a gunky nose and occasionally food is still coming up so we may need to see
a specialist if it keeps up.
Andi is great, it is amazing what she understands but still says nothing but Hi. She does speak in a language of
her own but no words that we comprehend. I am amazed though that I tell her to take her shoes to daddy to put them on
she does it. They learn so young it is so incredible! Oh and she is sleeping all night, sometimes waking once
but in her crib! She sleeps so much better on her own as well as myself.
Be back next week.
April 26th 2006:
Quick update, Lily had a great apt. with her cute eye doctor and it just so happened that Lily's friend Kaitlyn from
school had her apt. with the same Dr. right after Lily and so Mrs. Jean (Lily's teacher) joined us b/c she was going for Kaitlyn's
apt. anyway. Two ears... err rather 4 ears are better than one or err... two???? Whatever.
Dr. said she is seeing much better but has strabismus (wandering eye) in both eyes are he wants to see her one more time
in three months and will most likely suggest surgery for it. See this is a good thing b/c everytime he would see her
previous he would say once she is seeing better we will suggest surgery and now he thinks she is seeing better so woo hoo!
Surgery is not fun but if it will help than yeah!
Oh and remember I was fighting to get those genetic tests done in Chicago? Well the first one came back negative
(which I knew would) so they will now run the test that I am dying to have done. Another 4 weeks and we will know the
answer. This is the only genetic disorder she fits the profile to a T so if it is negative I think I will just quit
this search but I have a gut feeling it will be positive.
Tata for now
April 25th 2006:
Lily and I had a very busy day yesterday! She had OT, Speech Therapy, then a dentist appointment, teeth look great
and next apt. we will try a cleaning! Then we had a neuro apt. it went well. No big changes, he did amp up
her VNS a bit and it had her in a coughing fit most of yesterday which is odd b/c she has never had that effect in the two
years she has had that thing! But she is fine now. She went to school today and will go to the Eye Doctor at 2pm
today. Man, seems every three months we have all these apts at once.
She hasn't had a bad day since Easter so that is good and she has been pretty happy.
The girls loved having their uncles and Grandpa visit for Nascar this past weekend! They got very well spoiled
and loved every second of it!
We are heading to South Dakota for Grandpa and Grandma Nothdurft's big Grand Opening for their campground in Deadwood,
SD! We are very excited, I know the girls will love the "great wide open".
April 19th 2006:
So the Dr. thinks Lily has a sinus infection or a strep virus, either way she is being treated with antibiotics.
He hopes although he is no neurologist that her increase in seizures is because the infection got so bad. I hope he
She had a great day at school yesterday after sleeping all day Monday. I hope she continues to do well.
I updated some pictures. I didn't get too many good pictures of Lily bug on Easter because she had such a bad day
but got several cute ones of Andi so check them out! :)
So like any holiday it seems to be spoiled by seizures. I don't get it. All I want is for Lily to be happy and
have fun but it seems every holiday the little jerks in her brain seem to go haywire and set off firecrackers.
had her first one at 7am while looking at her Easter basket I knew we were heading towards a "Seizure Sunday or Seizure Easter"
but wasn't expecting them back-to-back all day long. She had one during the egg hunt at church, during nursery (I was
in there with her), at my mom's house when I decided Diastat was needed, she slept most of the day, woke up and bam another.
We went home she was in a good mood and couldn't sleep so she was up off and on all night and woke up ok, but her nose that
is usually filled with thick green crap is now filled with blood. I am calling her ped b/c she has been having this
nose crap pretty much since November. Lately it is just one nostril and it is very thick and green but recently
we have noticed her food coming out of it, just the right nostril. I don't know if it is all connected or what but I
think she needs antibiotics and I don't know what she needs regarding the food coming out??? Sucks. Always something.
I just wanted my sweet girl to enjoy her Easter. Too much to ask I guess.
fun and it was hard separating my love for watching her experience it all and not be sad for my sweet girl spending her day
sleeping because her brain won't cooperate. I will post pictures soon. I had to use my digital recorder to take
pictures since my camera is still missing and that takes more work to hook up so I will post them when I can.
April 14th 2006:
What the heck, it is mid April????? Anyway, Seizure Saturday has left and now last week it was Seizure Thursday
and this week it was Seizure Wednesday. I guess Lily decided to scare her teachers by showing them 3 nice big grand
mals. Then by the time she was home she was fine. A little sleepy but no more seizures and by the next day she
was full of silliness and hyperness. She can get so hyper it is hilarious. I guess when other three year olds
are hyper they run in circles and since she can't she just moves every piece of her cute little body and shakes her head and
it is so funny!
We cut off her little mullet she was growing and her hair looks much better now, a cute little sassy cut that is growing
out very nicely. I bet it will be shoulder length by the time she starts school again. I am jealous of her gorgeous
thick, fast growing hair! She is so beautiful.
Easter is this Sunday and I wasn't going to bother going all out on the girls and their wardrobe, got cute dresses and
shoes from Target but then Grandma Nancy calls from Nordstrom wanting to know sizes and now they will be the best dressed
kids at church on Sunday, like usual. :)
So I would be sharing some great pictures but my camera has gone missing and the scary part is that little Miss Andi
is very good at throwing things away, too good. Things that are not usually trash, ie Lily's Juicy Couture Skirt, Mom's
shoes, Dad's wallet... etc I am afraid the camera could have gotten tossed in there and with out me knowing it sent to the
dump. :( I will keep looking but my gut tells me that is where our cute pictures are as well as the expensive
thing that was holding them. :(
Have an amazing Easter!
Saturday" is back. Stupid. Oh well, it seems to just be Saturday so we'll take it.
our nose to Seizure Saturday this weekend and still went to the park. There was a special day for special kids at a
nice park in Scottsdale and we had a great time. Andi is always better outside running around as opposed to cooped up
in the house and Lily loved her first pony ride! We had a really nice day and were so glad that this day was organized.
Very nice. I will post pictures when I have a minute or two. Ha....
I am super
busy with working my job in payroll for my dad and when I am not there I am at the store but Lily seems to be having a lot
of meetings lately and we have a field trip this Thursday at a farm so that always takes first place to anything else
so needless to say I am very busy without a minute to my own but I signed up for it and love every minute of it.
been very rough at night lately and I have been doing ok with her the first 4 nights but last night after an hour of her nursing
and not going back to sleep I put her little butt in the crib and she cried no screamed bloody murder for maybe 5 minutes
and then was out. So I was glad I did that. I thought she would cry for hours but she didn't. Although she
only slept for two hours in there that was about the hardest two hours of sleep I have slept in a long time!
getting registered for summer school at her preschool. I am so glad they offer one! Only down side is there is
no bussing so this will be a very eventful summer with me taking her and picking her up and trying to work with her.... if
only they offered an after school program... hummmm Mrs. Jean if you are reading this what do you think! :) :) :)
March 28th 2006:
So nope now it isn't "Seizure Saturday" it is random bad seizure day or good day nothing in between but honestly I am
happy to say that she can go a few days with out a seizure and that is still better than where we were so we will take it.
It is so odd though, if she has a "bad day" it consists of at least three grand mal seizures but a good day has none.
It is so random. She has been completely off Felbatol for a month now and I think she is much more alert. Her
new med seems to be doing well, Lyrica.
Oh and some even better news is Lily's acidosis has completely gone away! Her levels were perfect at last check
and she hasn't taken the suppliment for a month when her blood was checked. I know I shouldn't have let her gone that
long with out it but her rx ran out and she was going in to see the doctor so I just let her go without the med and turns
out she didn't need it! Woo hoo.
Andrew and I met up with a couple that we met through the magical internet, Janelle's parents, on Saturday night and
had a great time! Mommy had one more glass of wine than I usually have and certainly felt it the next day but it was
great getting to spend some time with a family that completely understands what we go through and actually really enjoy their
company. Janelle's site is linked on mine and she is the cutest sweetest 3 year old in CA. Lily is the cutest,
sweetest in AZ :)
Spring Break Lily learned how to blow raspberries! It is the cutest thing!
now pointing and yelling at the dog. Maybe that is not so good.
to be having bad seizure days on Saturdays. It is the weirdest thing; she will have 3-4 big seizures on a Saturday but
be fine the rest of the week. She had a rough Sat. this past weekend but Sunday thru Tuesday were fine but then she
had one this morning right before the bus came and I haven't heard from her school so she must have been doing fine since
then. She is met off the bus by her favorite nurse Char on Wed.'s and Fri.'s so I won't know how her day went until
I get home at .
transitioning from the nursery into the one year olds room and yesterday I guess she had so much fun playing outside that
they think she will do just fine in the transition. She loves older kids much more than babies so I am sure she'll be
ok. She will just miss Miss Maria.
12mo well check was on Monday and all was well. She is 22 lbs and 30.5"! She got several shots and screamed until I
held her and then she was fine.
to the Nephrologist with Grandma Nancy and they said she weighed 38 (!) pounds!! I can't believe it. She getting
so heavy and outgrowing size 6 diapers so we will have to get her I guess diapers for special needs kids. I guess...
I don't know.
all from me for now. I got the cutest pictures on Sat. at the Renaissance Festival I will try to post them this week
March 17th 2006:
to Andi, Happy Birthday to Andi, Happy Birthday to Andi, Happy Birthday to Andi!
girl is officially a toddler! I cannot believe it! What a year!
I am so
proud of all her accomplishments. I know I complain about her and her lack of loving to sleep but she is one amazing
little girl who is incredibly spunky and so much fun!
incredibly smart and just wows us daily!I love this little girl and so proud
to be her mom!
sweet girl Andi Jane!Momma loves you tons and can’t wait to celebrate
many, many, many, many more!
Patty’s day to the rest of you all!
March 15th 2006:
First Andi and Lily are wishing Uncle Jeremy a happy birthday! :)
We had a very busy weekend last weekend! Mommy had her Grand Opening on Friday and Saturday at her store, Closet
a la Mode! Friday went great, Grandma Cheryl came to town and on Sat. Aunt Andrea and her friend Kelly came to town
to visit so we had a lot of fun! Friday's Grand Opening went very well but since it rained for the first time in 140
days, Saturday it poured so much I thought I was going to have to round up two of every animal while Andrew got to working
on the arc in the garage but it did stop come Sunday. Sat. was pretty slow but considering the weather we understood.
Sunday we had a birthday party for my little Andi and for cousin Skylar at our house. Andi loved all the attention and
all the toys! She had too much fun with her little baby doll and stroller, she wanted to not push the stroller but carry
it around and try to sit in it which didn't work out and she got her first big boo-boo, a black eye from taking a tumble on
the tile floor. She is fine though.
Grandma Cheryl is staying all week to help me b/c Lily is on spring break right now and since I refused her spending
the week at Lake Havasu she had to stay home with Grandma. Andi is also skipping out on daycare so I know she is loving
that. Next week will be her last week in the infant room and I may cry. She has to move into the toddler
room where they go outside to play. I know she will love the older kids but unfortunatly her favorite person besides
mommy is miss Maria at daycare and she won't be going into the toddler room so I think transition will be very rough for my
I had to take the girls to get their blood drawn, Andi's is to see if the suppliments are helping with her anemia and
Lily's blood should be heading to Chicago as we speak to get those tests that I said I would get done! Lily's ped approved
them and the blood was drawn and as long as the labs don't screw it up in three weeks we will know if the first is positive
or negative. If it is negative then they will go forward with the testing that I wanted done all along for the atypical
rett syndome. I can't wait to say to her neuro, oh by the way the testing you refused came back as so and so and smile
as to say, "you're not the boss of me."
I better get back to work but I just wanted to update and I will share Andi's party pictures hopefully when I have the
March 8th 2006:
So it has been brought to my attention that I am lacking in updating here.. ah hem Wendy ;)
Ok so I was very upset to have such an amazing day with Lily only to have it come crashing down the next two days but
on a positive note Lily went all the way to Saturday before having another bad day. The seizures seem to really be spacing
out and she has been doing well since Saturday but it seems the minute I say something like that they come. I think
it has something to do with that stupid Murphy's Law.
On regards to that testing I want done on Lily, I am getting some support. Dr. Haas in San Diego said she should
have a test done in Chicago before the one I want done and if it is negative then proceed with the one I want. But he
said it is best to work with a local Doctor on getting them done so I took Lily to her Pediatrician who said he will write
the script for me but wants to know exactly how to handle this so I have to call the University of Chicago to find out how
but that isn't as easy as I suspected. I called one person who transfers me to another and then I get a voice mail,
I leave one and never hear from anyone. Belive me I am not done with this, I will fly our butts to Chicago if needed.
I want that test done on Lily! Our ped agreed with me, even if a name doesn't change the treatment it is our right as
her parents to know that name. He is the best!
So Lily is doing well, school is going great. She is having a heck of a time growing out her hair, I regret cutting
it! It grows so fast and now just a major mess but we will get through this. :)
Andi is great, walking everywhere like a pro. She is almost running. She gets into everything and is only
happy when things are going her way but even as devilish as she can be she is so dang cute she gets away with it all.
Her birthday is next Friday already! Our little St. Patty's girl will be one year old! Wow, time flies!
Feb. 27th 2006:
So life can be pretty unfair. After this wonderful day with Lily, life has to kick her in the butt and she just
had seizure after seizure on Sunday starting with a pretty massive one. I ran and got the Diastat but she stopped before
She has spent most of today feeling very groggy, obviously. She has three therapies today so that just even made
her more wiped out. She had just one seizure today duing Music Therapy but adding that to the others yesterday is leaving
a sad little girl.
Andrew is working out of town yet again leaving him only actually home 3 scattered nights in 10 days. It is draining
doing it all alone and I give major props to single moms out there. I don't know how you do it! All I can think
of is I need a massage. Being sick on top of it all doesn't help. Anyway, this isn't what this is for, me griping.
I am just sad that Lily isn't allowed more than one amazing day. Stressed b/c we want to open our boutique onThur. and
we have a lot to do while working my payroll job and taking care of the girls and tired b/c I have been sick for over a week
now and just want a nap!
Send some love our way please!
Feb. 25th 2006:
I am super tired so this
will be quick but I just had to share what a fun day I had with Lily!Grandpa
Ray passed away on Wed. we are happy he is finally at peace and his poor body doesn’t have to fight anymore but are
sad for his wife, Andrew’s Grandma who has lost her second husband.May
peaces overcome her and help her through this rough time.Andrew left Friday
for the services and will be home tomorrow, Sunday, his birthday.
feeling well today, we had to work all day at the boutique to get ready for opening and after a long day I was bone tired
but still had to go to the mall to get daddy his birthday gift so me and Lily and Andi all went to the mall, meaning I push
Lily with one hand and hold Andi with the other.I hear Lily giggling but think
it was a fluke thing and besides I was frazzled so we power shop and I get to the car, obviously super frazzled b/c someone
thank goodness was nice enough to have seen I dropped my phone and put it on my windshield wiper.
We head to my moms, she was
having company over to welcome some Missionaries who are in town and Lily was sitting with Aunt Gloria and she heard her laugh
and Lily just started laughing, hard, full out giggles.She had the giggles for
an hour off and on and when they were on I took her and dipped her up and down and she just laughed and laughed.I couldn’t get enough so I was playing with her and she was just giggling!It was getting late so we had to head home and Lily giggled the whole way home!I called Andrew so he could hear this amazing sound and he was happy to hear it but more sad to have missed
it.Days like this don’t come often and it was incredible!I am still grinning from it!
I was so happy she was happy.I for once was at peace and comfortable with everything.She was telling me that she is happy with her life and I am too.I am just crazy about this beautiful 3 year old and just feel so happy and privileged to be her mom!
Obviously she is still doing
well with the wean and the adding of the new med.I just wish I could freeze
time and it stay this nice.
Off to bed.Goodnight.
So I failed
to mention Andi being sick b/c I was so mad at our neuro so I thought I would update on my poor baby.
burning up Sunday night (2/12) and was even sicker come Monday morning, we had to talk Lily to OT and ST but I knew Andi was
real sick so after a 30 min wait on hold with the ped's office I got her in at 12pm. I took Andi to the Dr. with Lily
and my mom came and took Lily to Music therapy for me since I didn't want to run anywhere else with Andi. Her ped said
so far she just had a really bad cold and pink eye and sent us home with eye drops. The rest of Monday was her sleeping
in my arms and only my arms. So Tues. comes and she appeared to wake up a little better, she still had
a fever and I kept her home from daycare. Wed. she seemed better and I had to do payroll so I took her to daycare, they
said she was clingy and sad but no fever and not real sick. Thurs. I keep her home again but she seems to really be
coming around, dancing to music and being silly so by Friday I felt comfortable taking her to daycare since I had to go to
our store and learn more of the computer program. By lunchtime I get a phone call that she has a low grade fever so
I say I will come and get her but Andrew says he needs to go to the airport first (he had planned a trip to Colorado for months
now) so I take him and get to the daycare an hour after they called and before I get in the parking lot they call again to
say her fever is now over 102 and I need to get her, I was in the parking lot thank goodness. So I get back on the phone
with the ped's office. They squeeze her in at 5pm on a Friday night and we find out she has a double ear infection,
possible nasal strep and possible bronchitis. Triple whammy! She got on antibiotics but this past weekend has
still been miserable! She would not sleep unless she was physically on me. I really haven't had that little sleep
since she was newborn. Luckily Lily slept through the night all weekend to save my sanity. So it is now Monday
morning and Andi actually slept real well last night, thank GOD but woke up at 6:45am screaming her head off, like body stiffening,
freaking out. I couldn't stop her for anything so after 5 min. of pure screaming I flashed her my boob and she immediately
stopped, nursed and was out like a light and slept until 8:30am! I got to get Lily ready in peace so that was nice.
After Andi woke up we went to Lily's therapies and Andi had a blast with all the toys there but Lily was cranky and I had
to constantly wipe her nose which made her more cranky so I am afraid Lily and me are now "it" in the game of sick tag.
I started last Friday and still have that massive pressure headache and Lily has green snot, yet once again. I think
if we all had a vacation from each other we would finally end this nasty cycle. Since that won't be happening I guess
we will just keep on the list at the pharmacy. Pretty soon feds will be coming in thinking we have a meth lab with all
the update from the land of green snot.
still doing well with the wean and adding the new med. She has days with no seizures and others with minor ones.
I am going much slower than prescribed with this new one b/c it really kicks her butt and I hate to have her so sleepy.
completed week one of the wean and adding the new med and so far so good. My only complaint is this new med is making
Lily very tired so I think I will go a little slower then recommended in adding more of it. Tomorrow we drop another
200mg in Felbatol, which is nerve wracking.
I am a
little disappointed in Lily's neuro because I faxed him a test I wanted done for Lily which I am almost certain will give
us an answer diagnosis wise and he said he cannot justify doing it right now. It is a $2000 test that can only be done
in Chicago but my insurance will cover it so it is stupid. All I need is a rx to take to the lab place and the test
will be ran but he won't do it, he said it won't change how they treat her and maybe in a few years it will be easier to run.
They don't lie awake at night wondering what is going on in her brain, they don't wonder if the possibility of any more kids
is a reality; they don't wonder what her life expectancy is. To say to me "it will only give "it" a name", says they
don’t really care about my feelings.
is for CDKL5/Atypical Retts Syndrome. Several other neuros have looked at her and thought she had Rett's but testing
has came back negative BUT this is a new test to check for a mutated gene that causes this. There is a direct link
between Infantile Spasms and Retts Syndrome. If a boy gets it is most likely fatal and it does what it does to girls
like Lily. If we were to get this test done and they said this is it, this is what Lily has then I would tie my tubes
and never think of a baby ever again. I would never risk it again, I think we didn't know about this before Andi b/c
I would have never tried for another child, not that we were trying but I would have prevented it much better if I believed
this is what Lily has. I think this is a crucial time right now in my life to find out what Lily has and they will not
stop me. I have sent an email to Dr. Haas in San Diego to see if he is willing to rx the labs for me and if he declines
I will go to someone else. I can’t believe they don't feel a name is important. I understand with a name
will not come a cure but to not understand what no name does to a parent is disheartening.
So due to recent increases in seizures Lily's neuro decided to change her meds around. We are weaning Felbatol,
didn't work last time so fingers crossed here and adding a new med that I don't know the name of yet. I know it is in
the same family as Neurontin that Lily was on back in Sept. 04 and it worked for a short time so here's to hoping it goes
Lily is doing well otherwise though and so darn cute! I am so proud of her! She didn't sleep too well last
night so between getting up with her and Andi I am exhausted and hoping to have a relaxing weekend.
Hoping that is.
That is all I have to update for today.. tah tah for now.
Feb. 7th 2006:
night Lily had a nasty seizure that actually had me contemplating calling 911. We didn't, thank God she stopped after
a few minutes of giving her the Diastat but it was nasty and scary and I HATE those! She had another one like that Sat.
morning so I doubled her up on Klonopin and let her sleep most of Sat. and Sunday she just had a small one in the evening
as well as last night so that is good. I hope this isn't a new thing though, every few days a big nasty one then days
of small ones. I hate those big violent scary seizures.
On a plus
note though Lily has been doing great in therapy at school and as well as her OT that we go to on Monday mornings. She
is pushing up on her arms more than ever and actually sort of caught herself with her arms when she was slipping. This
is huge because she has always kept her arms very close to her body, she doesn't use them to explore or hold things.
We are very excited to see her making these advances all the while having an increase in seizures. She is quite a trooper.
walking everywhere and seems to have given up crawling! She is getting so independent! She likes feeding the dog
her food and she likes to play rough with her daddy. She loves to tell everyone "hi" and is quite the charmer.
She had to go for a blood draw for her 9 month well check and I was dreading it so much I didn't take her until she was 10.5
months! She surprised the crap out of me by sitting still just watching them do the whole thing and not
even crying until she decided it was time to take her arm back and she couldn't. Yesterday her Ped's office called
to tell us she has low iron, not surprising since I have low iron and she is still nursing so we have to give her a supplement
and take her back next month. Never a dull moment around here!
Jan. 31st 2006:
Seizures are back. Big time. I swear, why do I even open my big fat trap? My mom rolls her eyes everytime
I say I jinx things by talking about how good it is but it is true, I jinx things.
She is back to about 3 a day and they knock her out. Grrrrrrrrr, I soooo hate seizures they SUCK!!!!!!!!!!!!!!!!!!
She has a runny nose again for the 100th time this winter and it seems to make seizures worse. OT said maybe she
has allergies since her nose never stops running and with the fact we have no rain here maybe a bunch of crap is in the air.
I don't know. I don't want to try to figure out why her seizures come and go. I feel like being stupid and just
let the Dr.'s tell me what to do and not have an opinion at all. I am tired of thinking.
Jan. 27th 2006:
wanted to give a happy update because since I got Lily back to her correct levels with Topamax and adding the Klonopin at
night she is doing much better, she has a seizure every other day it seems which is better than 3-4 a day! I am
not changing a darn thing and just let her be a little sleepy from the drugs, it is better than from the seizures.
so cute lately. School has helped her so much. She reaches out more to me and other things and she cleans off
her spoon with eat bite she takes. I used to just clean off the spoon kind of on the roof of her mouth b/c she couldn't
but now she takes bites off the spoon like a big girl. She is sitting up great for short periods of time and just being
back to her cute little self. She is such an amazing part of my life. I just love the heck out of her.
doing well as well. So feisty but so funny! She has 7 teeth now and is walking more every day. She likes
to dance and even tries to sing. She is awesome and I don't take a single milestone for granted. I may loose some
patience with her from time to time but she still has totally and completely completed and complimented our family greatly.
Have a fabulous weekend!
Jan. 24th 2006:
So Topamax wean is not gonna happen! No way! She did awful trying to come off that and I am not messing around.
I'd like to stay out of the hospital at all means. I am still giving her the klonopin at night as well and right now
she is doing better so I will not mess with anything! I hate drugs but if they keep my sweet girl from seizing then
she will be on all of them that she needs.
We went to Lily's friends b-day party on Saturday, it was lots of fun! Her name is Emmie and just the prettiest
girl! They had a bouncy bouncy thing and Lily and Andi both had a blast on it! Then Lily and Emmie and their other
friend Cheyenne were watch Strawberry Shortcake on their big TV and they all looked like they were in a trance, it was
so cute :) Lily also downed a huge piece of cake! That girl loves to eat! :)
Emmie's mom took a picture of Lily, Emmie and Cheyenne laying down in the bouncy thing and I just couldn't help but tear
up thinking how these three should be holding hands, jumping up and down and giggling together but they couldn't, they all
had to lay down b/c their bodies refuse to do what their brain tells them to do. I know I am a "Debbie Downer" but I
just don't think those thoughts will ever go away.
Andi has been real rough the past three nights and I am not sure what her deal is, maybe she is getting her 12 month
molars? I don't know. I just feel like she is a newborn again.... yawn.... she is walking all over and is such
a big girl! She is growing way too fast, I just can't believe in less than 2 months she will be a year old. Wow!
Jan. 20th 2006:
Bad news Dr. NG (neuro) called himself to tell me the study is now a no go. I am so freaking bummed. She
can't do a study while on a drug that is not FDA approved so we are back to the drawing board. I think he was bummed
too b/c this is his study but what can we do. She isn't coming off the Vigabitrine, although it isn't working like it
did in the begining it still is working better then before she was on it so going off is out of the question.
We are still going forward with the Topamax wean, just slowly. Very slowly.
Anyway, that is all I had to say. I will let you know plan Z. (that is a joke my friend Wendy always says
about her daughter when it comes to seizures, plans A thru Y didn't work so on to Z)
Ok so we
met with the study nurse and we have a game plan.I had no idea all the paperwork
involved!Wow!I am a bit nervous
b/c we have to go forward with some med changes and have them steady for a month before we can start this new med.Lily can only be on 3 AED’s (anti epileptic drug) and her VNS (Vagal Nerve Stimulator) is considered
an AED so we had to decide to either turn her VNS off or take her off a med.I
said we should try to wean the Topamax because that causes her to be in metabolic acidosis and we have to give her a supplement
to keep her blood not acidic so by eliminating the Topamax we can also eliminate the bicarb supplement BUT the big BUT is
that the Topamax is a good med.I am not sure how good and how much it helps
but I think it is worth a shot weaning.I did appreciate that when the study
nurse went to ask our neuro (by the phone) which option to choose he asked to speak to me since he likes my opinion in all
the decisions we make regarding Lily.I really appreciate that.He said we could do the safe thing and just turn off the VNS or do the risky thing and take away the Topamax.Topamax is a sedating drug and so is this new one we are adding so I would like to
see if we can’t get her not so drugged. I said “what if we try weaning
the Topamax and if she does poorly then can’t we just add it back?”He
said “yes, good question” so that is what we are going to try.We
will wean the Topamax, and if she doesn’t do too poorly we will keep her off and in four weeks we will start the study.If she does poorly off the Topamax we will add it back and turn off her VNS and wait
another 4 weeks to start.
This is a 11 to
15 week process that I will have to take Lily once a week to Phoenix to get her meds and they will do periodic checks on her
blood levels, neuro checks, urine checks, this kid will be totally under supervision and that is a great thing.I just hope this study does us good and in return also does a lot of good to help other kids out there
that will take this drug eventually.
So that is our
update on Lily.Otherwise she is pretty good.She spent the weekend with Aunt Gloria and Uncle Bill and had fun with them.I missed her like crazy and can’t handle being gone that long with out her.She is currently having 1 to 2 seizures a day but that is with another med (klonopin) at night that we are only supposed
to give occasionally but we have been giving almost daily b/c it really helps but it is very sedating.She is still going to school 4 days a week for 4 hours and loves it!
Andi is good.Very feisty!She is taking steps but
still prefers crawling since it is so much faster!JShe is full of spirit and is constantly making us laugh with her fake laughs, fake coughs and her constant
silliness!She knows bye-bye, kiss, night-night, and surprisingly no.Oh and we also call her "short circuit" (also a term of endearment I call Andrew) b/c well
she is.She gets frustrated quickly when things don’t go her way and I
have a perfect example of it: we were on the plane and across the aisle was another little girl her age.They were talking to each other and laughing at each other across the aisle but b/c other people were boarding
people kept getting in their way, well little miss Andi grabbed this lady and was trying to push her away and they lady thought
she was cute but Andi was mad at her.Then Andi tried to push this little kid
out of her way and he didn’t think she was so cute, he gave her a nasty look and we laughed.
Ok that is
my update for now! J
Jan. 13th 2006:
Very quick update to say neuro changed her VNS settings to a "rapid cycle" but I don't think that changed too much.
He also wants to get her into a study for patients with Lennox-Gastaut Syndrome
I didn't know he thought she had that but she fits the critera.
Anyway the study is for a new drug not yet FDA approved but I think it is worth a shot.
I will meet with the study nurse Wed. the 18th and we will start that med that night.
I have another buying trip in LA and Lily will be staying back with Aunt Gloria to get loved and spoiled by since I am
too afraid to travel with her right now with the seizures so bad.
I have no time to chat, just wanted to share an update from our apt.
Jan. 11th 2006:
I messed up, today is Lily's neuro apt. Ironically enough she only had two less major seizures yesterday.
We'll see how she does today. I still will demand changes with neuro today.
Yesterday Andi walked to me from several feet away! I was eating half of Lily's cupcake she brought home from school
and Andi was playing with her Elmo piano, she sees me, sees my cupcake and there she went about 6 steps or so and was so happy
to get awarded with some cupcake!
As happy as I am for her, she isn't even 10 months yet I still have a pang in my heart that she has beaten Lily to the
punch with every milestone. Lily has been in therapy almost 3 years now and isn't even close to the achievements that
come so easily to Andi. It is hard finding the joy for Andi and not feeling sad for Lily. I am sure this will
get easier, or harder who knows, as life goes on. I know my love for each of them is super strong and my bond with each
of them is different but both are so equally important in my life but it is hard to put away one set of feelings for another.
Jan. 10th 2006:
am not in a very good mood so this won't be a warm and fuzzy update.
seizures are freaking out of whack! I am so pissed about it too. She is having up to 4 a day and they are big.
They are ruining her therapies, school and just life in general. Ugh I hate seizures more than anything on this stupid
We go to
her neuro today at so we'll see what he says but I have a feeling it will be...
like jumping up and down and kicking the wall. She was doing so well. She was so happy. She was showing
us who she was and now boom. Seizures, sleepiness and crying. I want that little girl back that we were just getting
of that Andrew's Step-Grandpa Ray is on his last days, Andrew went back this past weekend to be there to see him and to be
some support to his Grandma Gloria. Ray is suffering and we need to offer all our prayers and positive thoughts
their way that he can pass in peace*
Jan. 3rd 2006:
2006! So we spent our New Years up north/east AZ in a tiny place called Greer, AZ where my parents have a second home. It is so beautiful
and usually so cold but it was in the 50's the whole time with no snow so daddy never got to play with his new snow board
and he stayed home with us they whole time! :) Andi faired much better this time on the 4 hour car ride and was
actually quite pleasant the whole time. She just loved all the attention Grandma and Grandpa were giving her and all
the playtime she had with cousin Skylar gave mommy lots of time to read her new obsession "A Million Little Pieces" by James
Frey. Lily was doing fairly well also until New Years Eve dinner when she refused to eat and we forced her meds
in but should have known if Lily doesn’t want to eat it is for a reason. She got sick several times that night,
hardly slept and then spiked a fever. Daddy was with her from so Mommy took over with her and Andi from
on. She ended up having about 4 pretty big seizures within about 4 hours so we had to give her the Diastat (emergency
medicine given rectally) and Tylenol for her fever and then she slept pretty much all day and then that next night but had
very few seizures and was feeling much better by Monday. No more fever, no more vomiting and only had one seizure that
early morning () and was fine the whole day and the whole ride home.
in this morning and at I finally woke her up, dressed her, brushed her hair, crammed
food and meds in and she wasn't done with her drink when the bus came so she was very upset that she was rushed and cried
when she got on the bus. The aide said she would give her drink to her on the ride to school and I called her teacher
(awesome Mrs. Jean) and she said she was happy and in a great mood at school and Mrs. Jean also said she loved her new outfit.
this year will be a good one, I know we are in a much better place in January 2006 than we were in January 2005.
this New Year will bring you all much joy and happiness.
Dec. 27th 2005:
So Christmas has once again come and gone. I don't think this one will go down in the record books just the same
as the past 4, seizures all day. Actually Lily had a couple seizures at my mom's and then slept from a quarter to 5pm
up until we left after 8pm. She was in a good mood opening gifts until she seized and our day went from there.
The girls got too much as usual, more clothes than me! But of course the wouldn't be my girls unless they were
dressed better than all the other girls! :)
We tried to do something normal lastnight and went to Zoolights at the Phoenix Zoo but Andi cried the whole time wanting
to be held and Lily had two seizures. It did start well though, both girls loved the carousel! That was fun to
see. Maybe next year will be better.
Today Lily had an apt. to get her AFO's fitted at 3pm in Mesa (30 min. from us) and Andi has an apt. w/ the pediatrician
at 4pm about 25 minutes from Lily's apt. I don't think I can make both so Andrew will probably have to take Lily.
I think Andi has an ear infection or something. She has a nasty cough, projectile vomiting, tugging her ears and just
so clingy and whiney. No fun, Friday they said she napped well and didn't cry too much at Daycare so maybe we are finally
getting somewhere. Poor kid, she only goes 2x a week and only 4-5 hours each time but you'd think they tie her up and
hang her by her toes there.
Well we are thinking of heading to Greer again this New Years weekend. We go every year but from our last 4 hour
ride with this child, I am a bit nervous. We'll see.
Dec. 21st 2005:
So the seizure monster is back with vengence! I am so frustrated and sad about it. Very hard to get into
the holiday spirit, even though it is my most favorite holiday, when you deal with seizures the past 4 years in a row.
The 19th was my birthday but again hard to enjoy when you are worried about your baby. She is still and will always
be my baby.
Yesterday Lily had a bad convulsing seizure lasting several minutes, I was seconds away from giving her Diastat.
She hasn't had that since March! :( Of course there is no Dr. to talk to because he gets to enjoy his holiday.
We are doing our best to still enjoy what we can. We have our two gorgeous daughters. We have the silly one
that makes us laugh all the time and the sweet one that loves hugs. We know we are very lucky.
If I don't update before Christmas, have yourself a very merry one.
9 months old today! I can't believe it. Last year I wished that both girls would be trying to crawl at Christmas
time. I have one that passed that goal two months ago and one not even close. :(
still having a heck of a time with her seizures. Her neuro finally called to say up her Felbatol by 100mg a day but
that has so far done nothing. She is still seizing three times a day and they are big and they make her so sad and sleepy.
She screamed in the middle of the night last night and I know it was b/c of a seizure. My poor baby.
is Lily had her holiday program yesterday and she was so cute! Her part was "8 pair of slippers" and she kicked her
feet when it was her turn. We were so proud she was so cute! She also got to sit on Santa's lap as well as Andi
and it was a fun time. She didn't seize until after the performance so thank God for small favors.
I am in
a Christmas performance of my own tonight at church. I play a waitress at Denny's with no family at Christmas time.
I actually got into a bidding war on Ebay for an original Denny's wait shirt. I paid $20 for the dang thing. I
think I will try to resell it back on Ebay to make up for it. So strange to be in a bidding war over a Denny's shirt.
will be watching the girls tonight for us, I am a little nervous about that. Andi is not the easiest to get to sleep
and we will be out until 9pm. I am a bit nervous about Lily's seizures and Andi's antics.
that is our update, seizures suck!
Dec. 14th 2005:
So Neuro of the year hasn't called yet. Lily had a big seizure right before she had to get on the bus so I am sure
she slept on her way to school and at school. My poor bug. It is so frustrating b/c she was doing so well.
I really am so bothered by this.... Merry friggen Christmas.
Hopefully I will hear back from her neuro today or else we may be in the market for yet another one. This is bull
crap, I swear I called about increase in seizures like 3 weeks ago.
Frustrated in Chandler, AZ.
Dec. 13th 2005:
Seizure monster is still here. Yesterday Lily had 3 big ones and they ruined OT and music therapy :( She
hasn't had one yet today but I doubt it will last long. Lily has her school holiday program on Friday, I hope she does
well with out any nasty seizures ruining it.
Neuro will be back tomorrow so he'll give us a suggestion then.
Dec. 8th 2005:
Sigh, I guess Dr. Mom wasn't right. Lily had a big seizure tonight at 5pm and is now crashed out b/c of it. :(
Dec. 8th 2005:
Well after another scary vomit filled evening Tues. night, Lily finally seems to be on the up and up. I don't know
if it was just a real bad flu seems everyone around me got it so maybe we gave it to everyone. She finally had a happy
note from school and I am thrilled about that. And no thanks to Lily's neuro I *think* I may have gotten her seizures
back under control. I upped the miracle drug, she has been on the same dose since 5 lbs ago so since the Dr. decided
to go out of town again I thought it wouldn't hurt to up it and we haven't seen the bad ones since that day I last updated,
the 6th. Praying and crossing fingers, whatever works that this will put us back to where we were. Hope this made
sense, still feeling the aftershocks of that nasty bug.
Dec. 6th 2005:
So Kidney Doc called back to say we just need to deal with our PCP on this and if PCP has any questions then he can page
him. I guess no one is too concerned. She might have just had the flu since I got bogged down by it yesterday.
Andi has been a pill all day today. I hope it is just her teething and not her getting it too....ugh. Life as
Lily's seizues seem to be making their way back into our life again. They are big seizures and knocking her out
again so now I need to worry about her on the bus. Worry about her sleeping all day at school now. Just seems
so unfair. I know I should be grateful for these past 8 months but it is so hard to believe that they might be gone
for good then boom, chair pulled out from under me again.
got to spend about 5 hours in the ER last night due to a very sick Lily. After church she starting vomiting, I thought
it was because she gagged on the mucus she coughed up but it never stopped. We stopped counting after 10 times and after
talking with the on call Ped, we took her to the ER. There they pumped her full of fluids, took her blood and urine
samples and sent us home. The Dr. pretty much said that there are 50 other kids in the ER with the same thing, stomach
flu. Weird thing is that Lily had no fever and no diarrhea. It just came on and she is still lethargic and tired
today. The girl at the ped's office said that we just need to watch her and give her clear fluids and so I decided to
give her Nephrologist a call to let him know what was happening. I want to make sure he doesn't think it is a kidney
problem. The nurse in the ER thought her urine looked infected but the ER doc. said it wasn't.
needless to say OT and Music therapy were cancelled today and we will see about school tomorrow. Good thing is that
even though all Lily got was her AM meds (she gets lunch and dinner as well usually) she only had a few minor seizures.
We were really afraid of what we would see missing two doses!
home and resting now and I think Andi and I will join her soon. Long night!
Dec. 2nd 2005:
good must come to an end. Lily is starting to have more seizures, lasting longer and affecting her much more.
Her school notes kept saying she has been sleeping at school and she hasn't been sleeping at school since her first week pretty
much. I think not only is she seizing that we see but there are more that we aren't seeing. That would explain
her crabbiness and sleepiness. I took her for blood work to check her med levels and they say that her levels are just
fine so he wants me to give her klonopin all weekend twice a day to put her brain on "rest" and he is hoping that it will
forget to seize (?) I will call next week if they persist. Luckily we have no plans this weekend so she will just lay
back and enjoy the buzz of a heavy drug. Poor baby.
gone to daycare twice this week. When I picked her up on Wed. her little eyes were all red and swollen. Poor baby.
They got her to nap for 50 min. which impressed me. She didn't cry when I left this morning but I am not counting on
that meaning anything. I am hoping to get out of work soon so I can go get her and get home to Lily who is home with
her favorite nurse who meets her off the bus Wed. and Friday's. It is amazing how you realize how crazy you are about
your kids when they aren't with you 24 hours a day.
nice weekend; ours will be restful and hopefully filled with the Christmas spirit while decorating the house! Christmas
is my favorite time of the year; I am not letting the idiot seizure monster ruin it!
has come and gone. We had a nice time in South Dakota visiting Andrew's side of the family but man is it ever cold there!
I say cold weather is for the birds but then again, it isn't even for them. We saw a lot of people in a short amount
of time and traveling with two little ones is a lot of work so I am happy to be grounded for quite awhile. My cousin
is getting married in Hawaii and we are all going on a cruise in June for the wedding but I am starting to doubt that plan
after this long weekend.....
Lily's neuro wanted blood work before making any new med changes so yesterday we went for blood work and we will wait to hear
from them to see if any changes can be made. She is rather cranky and still has a runny nose. I don't know if
she got "re"sick or what. I will see what her note says today after school to see if I need to take her back into the
Dr. again. I'd rather not; we've been there every two weeks for over a month now. Maybe the strep is reoccurring
again, who knows... we'll see.
getting braver every day; she is standing by herself with great balance and is able to walk only holding on by one hand!
She is growing way too fast! She starts daycare tomorrow and I have the hugest stomachache! It is something that
has to be done and will only be Wed and Fri for now until I have to work at our boutique but man am I ever nervous!
I am more nervous for those watching her. I have a strong feeling she will scream until I come back.
I hope you all had a wonderful long weekend and are preparing for this mass mess of Christmas ahead of us.
I probably won't be updating for a week due to going out of town I thought I'd give an update and share what I am thankful
first say that Lily's seizures are sneaking back up on us. They are getting longer and more frequent but I am willing
to bet it has to do with a 6 lb weight gain with out a dose adjustment. I have a call into the neuro today so we will
see what changes need to be made.
our pictures done on Sat. I am also willing to bet we were her toughest clients! I am sure we got a couple cute ones,
we'll see next Tues. when we look at the proofs. Let's just say Andi probably doesn't have the words "child star" in
turned out to be a nice day, we went to church and they celebrated its 25th anniversary. My family was one
of the sole families who have been there from the start. They honored my parents and a few others then we all went out
to lunch. After lunch we went home and me and the girls took a nap(!) I have not napped since Andi was newborn.
Nascar was too much for Andrew so he didn't nap. After our nap we all packed up and went back to church for a Thanksgiving
potluck. It was our Thanksgiving with my family. During the time of remembering our church and a fellow member who passed
away at the age of 95, the kids were sent to watch a clown and my awesome nieces took Lily with them. I shared a memory
with everyone and we had a nice time reminiscing. No matter what struggles I have with God I will always cherish and
love my close knit church family. When my nieces, Skylar and Lindsey, brought Lily back she was so happy and had
a ring and a balloon. They said she won in BINGO! I was so happy I sent her, I usually make her stay with me b/c
I am afraid of her having a seizure or something but I was so happy I sent her and Lindsey said she was "dancing" the whole
time there so I guess that means she loved it.
the other day for about 30 seconds on her own! She is cruising the furniture and I am afraid she will be walking before
I know it. Although it will be a great milestone to see her do it, I am worried that I will never sit down, ever again!
have decided I no longer can take her to work with me and while this really makes me sad, I think it will make my life a bit
easier. I will send her to daycare but just two days a week so it shouldn't be too traumatic although the child can't
handle nursery at church for an hour but if I can't hear her I will be ok.
I am so very thankful for my life, for my family. I have said it before but I will say it again, I have the best of
both worlds with my two girls and I am so thankful for them!
wonderful Thanksgiving from our family to yours.
to go now; I can hear Andrew saying, "No Andi, why don't you listen?" HA HA!
Nov. 17th 2005:
Gosh, Andi is 8 months old today! I have surpassed my goal of breast feeding and am so proud of myself! Not
sure if she will ever want to stop and I will be in People magazine for breastfeeding a high schooler but whatever may be
So Lily was not getting over whatever she had. Her note from school on Tues. politely said she should stay home
until she clears up. I took her to the ped just to be on the safe side and he thought she got strep again so she is
just starting to come around on antibiotics two days later. I kept her home again today and there is no school tomorrow
so Lily got quite a little break. Today is the first day she has been bouncing around and making her noises again.
She should be all good for our pictures on Saturday and just well enough to probably get sick again from going to the bitter
cold state of South Dakota!
Actually we are looking forward to our brief trip there, we haven't seen Andrew's extended family since Thanksgiving
2003! I just don't look forward to flying w/ Andi three hours nonstop!
Well that is our little update for now from the land of the sickies!
is just getting over whatever she got. She was so sad and to top it off she got backed up as well so I had to run to
Walgreen’s last night for some "help" and the kid checking me out couldn't even look me in the eye. What he doesn't
sell too many Fleet Enemas? Anyway, we got that problem solved for now and she did go to school today. They haven't
called for me to get her so she must be doing ok.
into a box of cheerios today and I got to see how well this Dyson really works, that sucked up those cheerios in no time flat!
dedication went well, she didn't like the Pastor holding her too much so I held her most of the time but she didn't freak
out or cry so I would say it was a success!
getting those top teeth and all I can say is hurry up already! Woowzers! If Andi ain't happy, ain't nobody happy,
not sure where that saying came from with the word mama in place of Andi but obviously not in my household.
I am a complainer. A tired complainer.
sick, backed up, teething and exhausted all is well here at the Nothdurft's! :) Just swell!
Nov. 12th 2005:
Both girls are sick so last night was a blast. Not sure what it is, I just hope I don't get it.
Andi Jane is getting dedicated at church tomorrow. I forgot to let eveyone know. Oops, sorry. Now you
Not much else happening with the girls, they are getting pictures taken at of all places Nordstrom (next to Target, my
home away from home). If you spend so much the sitting fee was waived, the ad was so nice I thought we should give it
a shot. The sales girl was so sweet she told the photographer about Lily ahead of time and the photographer called to
say she'd love to take her pictures and just wanted to talk before shooting. So sweet, right. Let's just hope
it goes ok.
Enough from me and my boringness.
a couple nights of no sleep Andi's second tooth popped through. Yeah, only what 30 more to go? That is like 60
nights of no sleep.....
what is new in our world? Lily is chunking up quite a bit and we had to go get new clothes! Well Grandma Nancy
did. She has almost outgrown all her 3T's. She has been in 3T's since she was 18 mo so that was a lot of clothes
to accumulate. At least Andi will need nothing when she is a 3T although not a lot of hand me downs up until 3T since
Lily grew so fast she never stayed in one size very long plus all the really cute stuff I Ebayed since my family had me convinced
my 2nd child would be a boy b/c the demon inspired pencil said so. Anyway, not important.
continues to do well. I was very impressed by her OT session last week; we have a new one (another one we drive to on
Mondays). She was sitting great and touching the beads by her own choice. I know that school she goes to really
helps, like a million times over. She is just doing so awesome.
growth spurt her seizures seem to be lasting a little longer than before, I am sure this is because she is outgrowing her
dose but I am not ready to up her dose just yet. The seizures are still brief, just not as brief so I will wait to see
if they get worse or stay like this. I really do not want to add more meds.
some errands to run today so we need to get to them before buggers gets home!
Oh we got
our shop and it is a big purple space. It has purple carpet and pretty intense purple I might add, the owner really
wants us to leave it since it is expensive so we will see if we can work with it. We are getting help from an interior
designer that gives Andrew a ton of work and we are going to start getting busy and hopefully will be ready to open mid February!
Holy cow, right? Wish us luck!
heaven on earth, Target.
So I guess
when you bat your eyelashes, flash your smile and say those three pretty words "good private insurance" you get what you need.
Dr. saying, "not walking, no braces", I say "is this a CRS policy thing? Would she get the AFO's if I saw you at
your private office and used my *good private insurance*?" He said, "I can write the rx if you don't go thru CRS, I
think she would benefit from them." And waala, we are going to get the braces. So sad though, if all we had were
state coverage Lily wouldn't get half the care she gets. I think it is only the rich survive, not strong.
been sitting up better on for longer periods of time! I also think we solved her sleep problems, she never slept through
the night and always tired in the day so we tried Melatonin and she is sleeping 8pm-6am and her notes from school say happy,
smiling, busy. Not sleepy! Go Lily! :)
is a pill she really is more fun than a pain. She has recently started kissing, dancing and "hugging". I even
caught her kissing a stuffed animal. I EVEN caught her kissing a little boy in nursery on Sunday! Her hugging
is laying her head on us, she has never been cuddly i.e. she won't lay her head on your shoulder so now that she does this
we are eating it up! She loves it too since we say "ahh sweet baby" when she does it. We are having feeding issues
with her. She wants nothing to do with baby food and wants our food. I am so scared of her choking I don't let
her try much but I think we are going to have to start experimenting more since I would like her to eventually eat more than
nurse. That's our update for today! :)
I was going
to give an update when I was adding pictures but I guess adding pictures used up all my time allotted by Andi on the computer
so the update had to wait.
we went to our church's harvest festival and I just dressed the girls in warm costumes. Lily hates that cat costume!
It was fun though, Lily won us a cake in the cakewalk and Grandma Cheryl got to join us!
at Lily's school they had a big fun party! That place is the best! Lily got to go trick or treating and with minimal
assistance (and lots of patience) she was able to grab her candy and put it in her bag! J She was the prettiest ballerina ever and she had both
Grandma's come plus her mom, dad and little sister! What a fun day!
a very cute little ladybug as you can tell from her pictures.My sister said
she is the first kid she has ever seen to not mind a costume on her head.I think
she just liked all the attention she got in it! J
we went to a local farm for their pumpkin festival.It was fun, both girls got
to pet the sheep and goats and even go on a bumblebee ride that went in circles.Mommy
wasn’t such a fan but everyone else dug it.Very fun day for our family!
to stay home for Halloween and hand out candy; I love the little ones that come to the door! They are so cute!
We were pretty costumed out by the time Halloween actually showed up anyway.
now into everything! Dog food, DVD player, standing up to everything and destroying everything in sight. She has
been miserable with teething so I should say so are the rest of us. She wants to nap more often and screams until
I get her to sleep. She sleeps horribly at night and refuses to eat food so she nurses constantly but her tummy still
growls, probably why she isn't sleeping at night. One tooth has cut through but I think until the others do life may
be a little rough. I think she is just insuring she will be our last child.
at school right now and when she gets back we have to go to the ortho clinic. Last time we went he said she didn't need
AFO's (ankle braces) since she'll never walk. So if we get that same response I will tell them that to not schedule
her any more appointments since we will be finding someone else. The thing with this stupid clinic is they don't want
to pay for anything. Since we have good insurance I can just take her to a private practice and get the rx for AFO's
and pay what the insurance doesn't. It seems like every other Dr. and therapist can't understand why a 3 yr old doesn't
have them. I feel sorry for people who have no other options but to listen to their HMO's. Bull crap.We wouldn’t even need to go to that clinic except for it helped a lot with getting her wheelchair,
everything else sucks.
are back! Let me just say that being a "professional buyer" takes ALL the fun out of shopping! Oh boy! Most
of our shipments will be shipped early Feb. so we hope to open late February! :) Although I am excited I am stressed
and nervous! We have a LOT to do before then!
very well considering how much we did with her. She stayed back with Grandma one half day but spent most that time crying
so she went with us the rest of the time. Everyone thought she was the cutest thing so that was good. At least
she was cute enough for people to not mind the unprofessional(ness) of bringing a baby to work.
Lily SOOOOOO much! I just couldn't get enough of her yesterday. I even got some giggles out of her so that made
it all worth it. I love that little bug! :)
Cheryl (Andrew's mom) came to help out with Lily while I was gone and is with Andi today and sounds like she is doing great
with her. I am so glad and can't believe I got all my work done and I even have time for an update before I have to
head back home today!
we need Grandma Cheryl to be the live in nanny! :)
is Lily's Fall Festival at school so that will be nice her Grandma gets to see her school and will get to see the girls in
their Halloween gear. Andi is a ladybug and Lily a ballerina. :)
So am I crazy to think time just flies? I mean 2005 is almost over! I have a three year old and a 7 month
Andi is quite the little crawler, although her only motivation seems to be me. She follows me everywhere and screams
when she can't get to me. Needless to say she still spends 90% of her day in my arms. She also seems to think
she can bypass this crawling stuff and go straight to pulling up on things, everything. She isn't quite a pro yet but
give her another month. She has learned to scream for things she likes and dislikes and about as high pitch as they
come. The dog seems to hate it the most, I know this b/c during her screaming fits the dog howles. It is
the most annoying thing I think on this planet.
Lily is fabulous! I just can't get enough of her. I saw her off this morning, which Andi just loves watching
Lily come and go on that bus she screams everytime Lily goes on that lift (in delight), and went back into the house and felt
a little sad. I know she loves school, I love her going to school but that bus ride still sinks my heart. She
is so beautiful though, man. I swear she gets prettier by the day. I have a ton of pictures I need to download.
I think I will revamp this site a bit. Change some things so I can add more new pictures. Anyway, thinking out
loud, writing I mean. Lily still brings home awsome notes and is sitting in a cube chair at circle time during school
now and not in a tumble form. That means she can hold herself up and doesn't need the extra support. My big girl.
Andi and me are going to LA this weekend. My mom, sister and me are starting up a woman's boutique in downtown
Mesa, AZ. We are going on our first buying trip and I have to take Andi since she is still nursing. I am nervous
to travel alone with her and even more nervous to be taking her around all day. My mom said she will stay in the hotel
with her during our appointments with the designers but I am also nervous about Andi getting us kicked out of the hotel, have
I mentioned the screaming fits? So wish me luck and my mom luck!
Grandma Cheryl will be coming down from South Dakota to help Andrew out with Lily. I really hate leaving Lily.
I am not a control freak on anything but my kids. I know that is so sad. I love and trust Andrew and Mother
in Law very much but I just hate to think of me missing out on anything. Oh well. Thus is life, right?
I will update when I return. :)
Hello there!We got back from San Diego late Tuesday night and I had to do payroll on Wednesday
but thanks to Lily getting strep throat we are home today.At least now I have
a chance to get some laundry done!Poor kid.She was so sick and sad starting Monday and we took her in late yesterday (Wednesday) to her pediatrician who just
thought he should swab her and check for strep and yup it was strep indeed.She
seems a lot better already after a couple doses of antibiotics.She has to stay
home from school though so I am taking advantage of staying home.I so wish I
could be a stay at home mom!
Anyway, San Diego.We left on Saturday (after again loosing my sisters stupid dog right before we left)
and after an incredibly stressful trip flying to San Diego we just went to the amazing home we were staying at in Coronado
and relaxed.Sunday we got in the car to go walk Mission Beach (Andrew’s
favorite place in SD) and Andi feel asleep on the way so I told Andrew I really would like to let her sleep so we just ended
up going on a two hour drive up and down I-5.Crazy thing was it was one of the
best things about the trip.We did go to Mission after she woke up, ate and walked
around.We headed back for again an early evening and relaxed.
Monday I wanted
to shop in La Jolla to check out the boutiques there but Lily got sick while we were there and was crying in obvious pain
so not after long we went back home and found out she had a 102 fever so Andrew got her some Motrin and we relaxed.It does kind of suck sharing a room with Lily.She thinks
she has to be awake from 2:30-3:30AM and she Grr’s, she grr’s from the back of her throat and loudly.So loudly she woke up Andi and I had to walk her around to get her back to sleep and I ended up going to
sleep with Andi in a separate room and left Andrew with noisey grring Lily.
some breakfast we thought we would go to the beach before our hectic day at the doctors and I am so glad we did.Andi and Andrew played in the ocean, Andi LOVED it.I mean
LOVED it!She just went wild.Andrew
held her hands and she lead him to the water and was laughing and having a ball.Andrew
said it was the first time in her life she didn’t care about me and where I was.I just loved cuddling Lily and watching them.That image will stay with
me forever.After daddy was tired of playing in the ocean w/ the wild one she
wanted to nurse and passed out.So I got to nurse and cuddle Andi all snuggled
up in a warm towel while Andrew snuggled Lily while she slept.We stayed for
about an hour letting both girls sleep.I know that hour was worth every little
stressful situation we endured.How often do you get to snuggle and breastfeed
your infant while looking at where the ocean meets the sky and listening to the sounds of the waves.It was such a special moment.
Anyway on to Lily’s
2pm dr.’s apt that we had planned out perfectly with a taxi and our plane ride that went to crap.We left at 1pm, got there at 1:15pm got checked in and brought back by 1:30pm.We thought, this is perfect, we’ll actually see the Dr. at 2pm and leave at 2:30pm get home for our
taxi at 4pm, etc.Well first the guy was such a dummy taking Lily’s weight
and height.They had to weigh Andrew first then while he held Lily.After some difficult math the scale said she was 34lbs.I
thought she was 31lbs but kidney doctor said 34lbs and so did this place so I guess she is 34lbs (!) Anyway, he laid her on
the table and measured her like they do infants but he said his measuring tape was too short and he could not get her height…..
I guess the thought of taking the tape as far as it goes, marking it and adding to it again never occurred to him but whatever.Then he puts us in a room with scales and other equipment, bad idea.Our whole family was weighed, measured and were on to blood pressure by the time they came in to move us
into another room, they probably had a security camera watching us mess with the equipment.Anyway we waited until 3pm to see the doctor.While waiting I checked
both girls ears and they were clear.That was the only thing to play with in
that room.We waited til three and he had nothing to say.Seriously.According to her abnormal muscle biopsy he wanted
to check blood work more in depth to see if she has a Lysosomal Storage Disease.I
asked if she does is there any treatment and he said just stem cell transplants in infants but not older children and they
do infusions but not on storage diseases that affects the brain (which whatever Lily has it affects her brain).I asked if it is not this then what and he said we give her a break.He said she is improving not declining like she was when he saw her back in January so he is not concerned with her
health.So in the beginning of the appointment he was talking about getting bone
marrow then he was saying we would do nothing.I agree she needs a break after
this year anyway so I am all for a break but I think he just has exhausted all his efforts and if this is not it then he doesn’t
know.At least we don’t need to go back anytime soon.He will call with her results, which should take a month or so.I
guess I think we will never get an answer.I think it isn’t safe to try
to have any more kids since he does think it is genetic and in most cases the odds are 1 in 4 and it isn’t worth risking
it.I guess we’ll never have that son but we are counting our blessings
having two amazing, beautiful girls. Anyway after our apt. and blood work we missed our flight but thankfully we flew
Southwest and you can change w/o a fee and they fly every hour from Phoenix to San Diego and vice versa.
Oh and great news,
after some seriously traumatic tests on Andi her kidneys are just fine and she does not have to stay on antibiotics!Andi also started crawling this week and looks like after being parents over three
years we finally have to baby proof!She is just learning and developing so fast
it is so fun to watch.We really have the best of both worlds.I am not just saying that I truly mean it.
I am a bad mom
and didn’t charge the batteries to our dvd recorder/camera so I have no pictures to share which is a bummer since Andi
on the beach was so fun but at least I have them stored in my head.I know that
sounds cheesy but it is true.It is our families memories we will keep, just
Oct. 6th 2005:
So did you all see the freaking spam on my guest book? How stupid! Whatever...
Tomorrow is Andi's testing. I am afraid it will be a very miserable time for all of us. Poor baby.
Praying she does not have kidney reflux.
Sat. we fly to San Diego. We will be staying again at the gorgeous home in Coronado of family friends. Lily's
apt. is on Tues. and I am really hoping and praying we get some answers, something, anything. This is an update to all
that testing done back in January.
We will enjoy the amazing weather San Diego has to offer, we are getting a bit tired of this never ending heat here.
This is short but I wanted you all to know what is happening and where we will be for the next several days.
And to vent about that stupid spam! That makes me so mad!
Keep us in your thoughts and prayers please.
Oct. 3rd 2005:
Since Andi just deleted my first update and I don't have the energy to rewrite the whole thing, this will be quick.
Lily had her 3 year well check, she was 31lbs and 40.5". 50% in weight and 97% in height, go figure, tall and skinny.
She got her 2nd Hep A and so far no bad reactions so that is good. I was afraid grand mals would come back but
still they are gone :) She was pretty sad though after the shot. :(
Andi has her u/s and cath test on Friday. Pray she does not have kidney reflux, giving her antibiotics is like
force feeding her poop. Well I assume it is the same. I can't imagine her on meds long term. She has no
I think Lily will be a ballerina for Halloween, she looks so delicate and beautiful with her short hair, just like a
ballerina. I keep singing Tiny Dancer to her. I think Andi will be a monkey. Suits her.
I am tired. I wish Andi didn't some how delete my first update.
sorry no updates. I finally tried yesterday and this site was acting funky. I about had a heart attack, thinking
my site was gone!
big news is Lily got a major hair cut. What a tough decision for me. Something so simple as a hair cut caused
much stress. Not that I am that superficial, it was just another reminder of how we have to change our ideas of life
and our expectations. I did not want to do it. I want her to have princess hair but that is all me. Lily
wants to not cry every morning over her hair being combed so she won, as she should have. She was so good too; she just
sat on daddy's lap, drank her drink and got her haircut. She is a princess.
still doing great in school. They tell me she is helping holding her cup... who is this child? She is so cute!
We are just so proud of her.
as Andi goes, she goes for testing (an ultra sound and cath dye x-ray test) Oct. 7th. Should be a blast :( She
seems to be learning and developing so quickly all of a sudden! She is rocking on all fours. She is babbling (mama,
baba, dada), babbling had me excited considering I was ready to call in a speech therapist since she wasn't doing it yet.
I have waited three years to hear it and it came from another little mouth. It really is the sweetest sound and such
a milestone. I just keep wishing Lily would pick up on it. Andi is also jumping in her exercauser and will tolerate
the stroller now for short periods of time. I have learned to take my frustration at not getting her back to sleep in
the early AM by putting on my walking shoes and taking her for a 5am walk. Helps me in several ways and she loves to
take it all in. She is pulling up on us and also can sit unassisted for quite some time. She certainly is a character
and although I am tired, I am also very proud.
one child struggle through each milestone really helps a parent appreciate even the smallest steps.
her inch stones and Andi has her milestones. No different in my heart.
finally going back to Dr. Haas in San Diego on Oct. 11th. We are making a trip out of it though this time. No
more turn arounds, yuck! Praying we get some answers this time around.
Sept. 20th 2005:
Well just as her Ped. expected Andi does have an infection and unfortunatly the $15 antibiotics he rx last Thursday that
I have been fighting to get into her do not even touch this and we had to get $50 antibiotics and start all over. She
fights and screams when I give it to her and now we get to start another 10 day cycle. Yay.
We also go for her 6 mo well check on Thursday and he'll check to see if it is clearing up and we will have to take her
for those tests to find out why she got this in the first place. Oh brother.
I just can't believe the cath test she has to be awake for. I'm used to taking my baby for testing but she usually
got knocked out before them. Oh well, her brain is good so I'm not complaining.
The other day at Music Therapy while I was waiting for Lily and in came a little girl with Down Syndrome, I see her weekly
with her dad and usually get a kick out of her. She is so cute and is usually wearing a tiara and daddy's girl shirt.
She acts like the self appointed princess she is and I love seeing her, but this time she was not in a good mood, obviously.
She was sulking with her arms crossed and when her music therapist came out her daddy said that she is sulking b/c she got
in trouble at school for...... cussing! Her music therapist said that does not sound like you and she continued to sulk.
I couldn't help but giggle. How cute I thought, she is such the typical little child and then her daddy leaves and this
mother of an autistic child said to a another "he should be counting his belssings she can get in trouble for something like
that". I just wanted to ring her neck. I felt like saying you should be counting your blessings your child
walked into this place but of course I didn't. I was raised well, I don't speak to strangers. I also would
never get in a (pardon my french) pissing match with whose child is worse and I felt sorry for that woman who would rather
sit in a pity party than get delight in a cute story. Ugh some people need therapy (or a website) to get thru their
love that picture of Lily smiling! Did you all read the poem on the home page? Had me in tears, I read it on one
of my support groups (message boards) and I just had to have it on here, it is so Lily. My silent angel.
Well maybe not silent, she is a noisy little angel actually but no "words".
neuro apt. was uneventful. He wants to make no changes after I said "I don't want to make any changes". If it
still bringing home awesome notes from PreSchool. She is just doing great. We think she might be catching on to the
sign "more", I kinda think she is just clapping her hands but her teacher and OT seem to think she is pretty consistent with
it during her lunch.
poor Andi to the pediatrician yesterday thinking nothing will be wrong with her it is a waist of time only to find out after
they put her pee (not fun getting that pee by the way) in some kind of machine it came back conclusive with a kidney infection.
If the culture proves that is the case she will have to have a couple tests to find out why she got it in the first place
since they aren't common in 6 month olds. He put her on antibiotics and already after a couple doses she is far less
irritable. Poor baby, I just feel awful and figure they will pass me up this year in the crowning of Mother of the Year.
Pretty sure being mad at your cranky baby while she is very sick is an automatic exclusion. Oh well, maybe next year.
continues to do awesome in school! I love reading her notes every day when she comes home. Today she was talkative,
busy and friendly. She always seems to be talkative. That's my girl! :)
doing great on the bus. I followed her bus half of its route today and it is such a mix of emotions to watch her on
a vehicle other than my own. I kept seeing her little ponytail bobbing around, as she shook her head no several times!
Music Therapist swore that Lily was signing stop to her right on cue several times yesterday. Maybe, I am usually skeptical
of those things.
is cute though, that is for darn sure! :)
had a fever since Friday. Her Ped thinks it is just a viral but man is she ever a crank. Poor thing. Her
fever has gotten to 104 the first night but it has only gone to 102 since. The Motrin takes it away but it always comes
back. If it persists for another day or two I will take her back to the ped just to make sure it isn't something more
serious. Poor baby. At least Lily has stayed away for it, thus far.
be 6 months this Saturday! I can't believe it. The child needs to spend more time on the floor and not in my arms
to start figuring life out! She can pretty much sit unassisted and she does push-ups on her tummy and does circles on
her tummy but not rocking yet to crawl. That will be a whole different world for us.
likes to put things over her face, freaks out when she can't breathe and then cries when you take it away from her.
She can't stay out of my sight that is for sure. That is why I don't post much. So crazy with work and being a
full time mommy.
Sept. 6th 2005:
Well we went up to Greer (north eastern AZ) for the weekend. It is normally a great time but since we brought Andi
the ride there and back made it so not worth it. I will spare the details but it will be a long time before we travel
by car with this child again. (it is a 4 hour drive each way with no traffic, add holiday traffic and it is a lovely
5 hour drive). Anyway, Lily loves it up there. It is so incredibly beautiful. The high for the day is in
the 60's. My dad bought a bunch of land near their cabin (more like house) with several lakes. My sister's kids
and my aunts kids spent every second of daylight out there playing on the ATV's and fishing. The guys (Dad, Uncle, Brother
in Law and Hubby) spent every minute of daylight "working" with the tractor thing and dad was making sure the chemicals were
correct in the lakes, I don't know???? Anyway, us woman hung around the house, one day we went for a walk but then it
started to rain so it turned into a brisk walk/jog. We got ice cream and waited the storm out. Lily loved the
walk, Andi loved it as long as she was in the sling, God forbid her in the stroller. There were 18 people all together
in a 2 bedroom house. My parents get their room of course and my sister and me share the bedroom which would
have been fine but we had to bring in our spouses and children. My Aunt and Uncle were in the loft and there was a sea
of kids all over the living room floor and couches. It was chaos! It was nice but certainly will be a long time
before we brave that ride again.
None of this is interesting I know this.
Lily starts a 4 hour day today. I am going in at lunch time to show how she gets her meds. I hope she
does well. 2 hours have been great, 4 may be a bit much. We shall see.
Sept 1st 2005:
Lily has been riding the bus for three days now and it is going great! She is such a big girl! All her notes
being sent home from PreSchool are happy ones and I couldn't be prouder.
I tried following her bus the first day she took it and as my luck would have it I couldn't turn right after the bus
b/c of a long stream of cars and then when I got to make my right turn the bus was making a second right. I still kept
him in my distance but then the dang red light got me and that was it. Mrs. Jean was so nice to call and tell me she
made it there and safely. I did by chance end up following her bus on the way home so that worked out good and I can't
tell you how funny/cute/sad it was to see her little pony tail bobbing around on a vehicle other than my own.
I just finished this awesome book called My Sister's Keeper. It was so thought provoking and well written and so
sad. I just can't get over it. I don't think I have ever read 400 pages so fast! I recomend it to everyone!
"To My Sweet Girl"
enter into a new age. A new year and the only way we can welcome 3 is by giving 2 a proper farewell.
two for you has been filled with lots of ups and downs and thankfully it has ended on an up.
out not too bad. You were having some big seizures but they weren't anything we weren't used to. You were going
to become a big sister and we were happy to expand our family. You were a beautiful flower girl in September (prettiest
one I have ever seen). A kitty cat for Halloween in October. Your seizures started worsening that fall and we
were experimenting with lots of different meds.
out about a Dr. Haas in San Diego specializing in pediatric neurology and metabolic specialist and I sent him your records.
Your grandma Nothdurft came to visit for Thanksgiving and I cried on Christmas day because your seizures were just getting
so out of control, you slept most of that day after seizing. I finally gave in and went to see the neurosurgeon to discuss
brain surgery even though the thought sickened me. Med changes after changes and the seizures were getting worse and
worse. Dr. Haas in San Diego wanted to see you for testing but admitted there wouldn't be much he could do to avoid
surgery. My heart pounded, my palms were sweating and a million butterflies were swarming my tummy as I called Dr. Rekate's
office to schedule your surgery. We had it planned out well with Dr. Haas in Jan., surgery in Feb. then Dr. Rekate's
office called to reschedule for Jan. and we feared we wouldn't see Dr. Haas first but we did. We tried to take you fun
places in San Diego but you had so many seizures you just wanted to sleep.Dr.
Haas had no answers (yet) and we decided to continue with surgery. Lily if you could only know what that decision was
made from. Sleepless nights, million of tears and shear frustration from those seizures that nothing would stop them.
Leaving you that morning I will never forget and I pray to God I will never relive. That was a moment in my life I wish
we could take back. When they said you were seizing right out of surgery my heart broke in places I don't think can
ever mend. I never left your side baby girl. You were so miserable and in so much pain I hated myself for making
that decision. You had a few seizure free days but they came back and with a vengeance. When we came home from
the hospital and you were seizing, I was so angry and upset and thought that was what your life would be forever.
I had to spend a couple days away from you and brought home your little sister. I know you will eventually like her
a tough couple weeks with your seizures and taking care of your fussy little sister. I hope you didn't think I abandoned
you. I never ever would.
took you to Dr. Ng and he said "let's just try vigabitrin" and my friend Kelly, remember her she is Janelle's mommy, we met
them in San Diego? She gave us Janelle's Vigabitrine and the next day those big seizures were gone my girl!
to make some adjustments with dose and your other meds and you still have some drop seizures from time to time but your quality
of life has changed from practically none to the best! You spent this summer being happy, rolling all over, tall knelling
and just last week started Pre School. You are making new sounds, laughing all the time, smiling at us and clapping
your hands. Two put us at the lowest place and has brought us to the happiest place. The saying you have to take
the bad to appreciate the good is so true. Had we never seen those dark, dark days we wouldn't understand the miracle
we have today.
are my angel, my shining star and my honest to goodness hero. You love with no conditions and continue to teach
me the important things in life and to you I am grateful. I only hope to teach you a few things in this life as
you more than any words can say. Happy Birthday sweet girl and lets hope three is filled with so many new and fun things!
first day of school was awesome! :) She did so well. She was zonked out on the ride there and slept about
15 minutes of the beginning but woke up and was ready to go. She said hello to everyone with a switch she hit and choose
to sing "I love you" from the switch as well. She brought home a card that has her picture and it says "first day of
school 2005" she is so cute. She wasn't the best dressed so we will have to up the ante tomorrow I suppose! :)
did well, I think 2 hour days will be a great way for her to adjust and she'll be ready for a 4 hour day come 2 weeks from
can't believe my baby will be 3 in less than a week.
has some friends in her class that we have known for a couple years now so that makes things even better!
and I watched for the first hour but then left b/c of Andi and I came back to get her at 11am she then ate lunch and crashed
I am so
excited to see how she will excel this school year! Stay tuned for big things this year!
had her IEP (individual educational plan) yesterday and all went well. Her goals for the school year sounded realistic
and they said she could start preschool on Tuesday, this Tuesday! We thought we'd have to wait an additional week since
she won't be three until the 28th but they said she could start with everyone else. They said she could attend The Foundation
For Blind Children, we pretty much knew she would but the district had to make that determination.
I am so
excited for her. School will only be half days 8:45am-11am for the first two weeks so that will be good for adjustment.
She won't be bussed for a couple more weeks and that is the scariest part for me so I think this will work out perfectly!
Aug. 17th 2005:
I wished I owned stock in wet wipes. As most moms know wet wipes are for a lot more than wiping bums, they are the key
to parenting. Some days we use just 6 or so yesterday we used about 20. Heck my sister's youngest is 8 and she
still carries them in her car with her.
an eye doctor apt. at so we left at , Andi was sleeping most the ride and actually woke in a nice mood and the drive was rather pleasant. We arrive
at , doing amazing I must say considering my middle name should
have been Late and not Dawn. Then I put together the wheelchair, put Lily in, grab Andi and notice her pants are soaked,
what the heck? I take off her pants and some how she managed to poop outside of the diaper, not sure how that happened,
maybe it has something to do with her fascination with her toes and her legs were up and splat? I don't know, all I
know is I had no other change of clothes so after about 6 wet wipes and just taking her pants off we went to the apt. now
is AWESOME, we love this guy. Lily did so awesome looking at things, something she usually does not do for him, and
he said we still need to continue patching both her eyes for an hour each day and we left all in good spirits.
So I put
the girls back in the car, put the wheelchair away, Andi for some reason is still in a decent mood so I am just driving along,
singing and enjoying the quietness of the car, then I turn around and glance at Lily and I see red on her leg, I turn back
and say to myself, I talk to myself, is that blood? I turn back around and yup the kid is covered head to leg in blood.
I freak, I go from the left carpool lane to the first exit I can get to and pull into a parking lot, my hands shaking and
I get out of the car and run to Lily and look and see nothing wrong with her. All I can think was she had a bloody nose
but I mean blood in her hair, all over her hands, her entire face, the car seat and her clothes. It was the scariest
thing I have ever seen yet she was all smiles so it was really creepy.
about 10 wet wipes I get her somewhat clean and we head on our way. We were going to OT and eventually Andi had it with
the car ride and started crying, Lily looked right at her and yelled so then Andi's cry went from pissed to hurt and I couldn't
help but think it was somewhat funny.
to be so mentally alert yesterday and it showed in OT. She was such a little champ!
though I am out of travel wet wipes it was a pretty good day!
took Lily up north to Greer this weekend, my parents were going as well and I thought maybe I'd get a nap since Lily and Andi
never nap together. I thought I would catch up on sleep and feel great.... that is what I get for thinking.
I ended up spending most of the day with my sister and her kids. I like hanging out with them, their house is chaotic.
I love my nieces and nephew and just talking with them is fun for me so I spent pretty much the whole day there but
Andi didn't nap well because she is used to our quiet home. The right thing to have done was to go home and both of
us sleep but I did not make that appropriate decision. I took my sisters American Eskimo because they can't keep him.
He is on the page of Lily’s third year his name is Chompers. He is an idiot. He can't use the doggy door.
He acts like it is a ring of fire when I can finally get him to come thru it holding it up. He has yet to go thru it
alone even though my dog Haley has shown him 100 times.
my point is here somewhere. Andi didn't nap well and when she doesn't nap well she doesn't sleep at night well either.
She was up every freaking HOUR last night! At 4:30am I am embarrassed to say I gave her Benadryl to try for a few more
hours but guess what time she woke up for good? 6am. She is napping now but since I had to get a Starbucks vanilla
iced latte at 7am am I napping of course not. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
my Lily and glad she'll be back tonight. She's my favorite.
Ok I seriously
hope you didn't take that seriously...... lol
So we were
at Target the other day and we pass the little girl underwear and Andrew says "when will Lily wear those" and I send him a
death dagger with my eyes and he says "that sucks".
I never even thought about little girl panties on Lily. I have thought about the dance recitals we will never see and
the soccer games we will miss but little underwear never crossed my mind.
I was reading
about this place that holds tea parties for little girls and it says ages 3-100 and I was sad all of a sudden. Lily
turning 3 means so much. Means she isn't a baby. It means other girls her age are going to tea parties, playing
dress up and getting into their moms make up. Sorry just feeling sorry for myself moment.
On a happy
note I do know the things we will NOT miss this year. Lily's first ride on the school bus, Lily's first day away from
home as a big girl, Lily's first Christmas program, school pictures and new friends. I know we are so fortunate to have
Lily attending the best school in the world and will have the BEST teacher!
sleeps hanging from my neck in the sling, the only place this child will sleep even after buying a $200 baby hammock
thing that I thought she would enjoy, I realize the reasons for her needing this comfort. First off she was comfortable
snug in my womb and boom without a moments notice she was taken out. She didn't go through any labor just one minute
in and one minute out. No wonder she couldn't sleep from day one without being snuggled next to mommy. Secondly
I never put her down because the bassinet I had for her to sleep in was the exact one I found Lily seizing in at three weeks
and every time I put Andi in it I got sick to my stomach because that image was all I could see so she was held a lot.
She also has a crazy stubborn personality so nothing else will do but being close to mama so although at times it is an inconvience
I also know she will be 3 as well and no longer my baby and she will be off to preschool so I have to keep things in perspective.
Plus the sounds of her deep sleep are almost intoxicating. Her smell doesn't hurt either. Almost makes my shoulder
not hurt. Almost.
Aug. 8th 2005:
Hardest part of having two kids? Naps! Ugh. I get one to sleep and the other wakes her up. Today
Andi screams all the way to music therapy while Lily is trying to sleep, b/c of A's screaming L can't sleep and apparently
was a pill in MT. So on the way back I get A to sleep before we get in the car and L wakes her up, then A is fine for
awhile but once L goes to sleep in car A screams waking up L. Now home both are playing on the floor neither had a good
nap..... I would love one as well...
Aug. 8th 2005:
Lily's evaluation went well! She used her voice so well! I thought she would have been intimidated with all
the people, I was. They asked me lots of questions and then they all observed her playing on the floor. The vision
specialist said her vision function is very low but I already knew that. I guess her vision used to be the least of
my worries but it is slowly moving up on my list of important things wrong with Lily that bother me. It is more obvious
that her vision is not really just impaired but more like blindness. I hate to say that but it is true. At least
they agree 100% the best place for her is The Foundation for Blind Children.
Grandma Nancy took all her grandkids shopping on Saturday for school shopping and Lily was not left out, she will indefinetly
be the best dress girl in her class! Sister Andi also got a couple outfits so she wasn't left out. Mommy went
a little shopping happy at Gymboree at the expense of Grandma! Thanks mom!
I have both girls at work today and Lily is watching Barney and the show makes it hard for me to concentrate. Or
maybe it is Andi on my lap going hogwild with some mylar wrapping paper that is for Lily.
I decided to start a blog that has my opinions of things so I don't do it here. It is just how I feel about other
things about life that don't include my girls. Like gossip, celebrity talk and stupid unimportant things. Not
censored. Not that it is bad but just not censored. I will only put the link up once here b/c I am not advertising
it I just wanted you all to know that I won't be getting on my soapbox here unless it directly relates to my girls.
If it has to do with my hair it will go on my blog. http://nordyswifey-ivil.tripod.com/kimsblog/
The link will also be on the about me (mom) page.
20 days until my big girl will be 3! Wow!
Aug. 1st 2005:
to add that Lily has her evaluation with the city of Chandler school district on Friday the 5th. PT, OT, ST plus someone
with vision will all evaluate her and see what level she is on. It is time for mama to put her "big girl panties" on
because those always suck. It is like we are happy with Lily's progress and those things just tell us where she should
be and where she is not.It also says what classroom is most appropriate for
her but I joke Lily could walk in there and she’d still be a Murphy’s Munchkin, Mrs. Jean already loves Lily and
will have Lily in her class no matter what!I am so happy Lily is going to a
school where she already knows everyone and everyone already knows her!Just
wanted to add that, it is a big step in Lily's life, school evaluation!
August 1st 2005:
are you a retard?”
I am back on my soapbox today because I hate that word retarded.I will be the
first to admit, yes I used to use it and often and I know that was wrong, boy do I ever now.It seems like a word people say and often with no regards as to what they are saying.Like racist terms are very politically incorrect and if someone uses it around the wrong person their butts will be
beat yet if someone uses the term retarded around me I never say anything although my ears burn and my stomach flips over.I don’t think anyone understands the magnitude of the word unless they read
their child’s medical records and stumble across the term “mentally retarded”.Any other word in all of her records just all go together and are just fine but those two words placed
together sting like none other.So yes it is just a word.A word people use to degrade one another but the word they are using is a word Dr.’s describe my
daughter as.So what they are basically saying is “what are you Lily?”Now that sounds a whole lot different and I hope people will think that next time
they think to say retarded in a degrading way.
this anger because I was watching The Surreal Life yesterday, I know I don’t have the classiest taste in television
and Janice (“I’m a Supermodel”) Dickinson was calling a kid in a group of mentally handicapped kids retarded,
plain as day and it pissed me off.You know Janice Dickinson acts like she is
this huge supermodel yet what is she 80 years old?She has tons of plastic surgery
and still looks 80.She lives in a world that is all about her and her ugly self
and cares nothing of who she hurts and who she upsets.
whatever; I just thought I’d blow off some steam here.Maybe someone will
read this and stop using that word. Maybe.
my beautiful almost 3 yr old princess is doing just awesome these days!She is
so funny and full of laughs and smiles and even some attitude that just seem to have crept up on us. She gets mad at certain things and when she is tired she really whines and it is kind of funny.Andi pulled her hair and she just yelled and fussed for at least 5 minutes.I understand that it hurt but not that bad.She was just mad that Andi
did that to her.Our little princess, so dang cute.She is so funny when she shakes her head back and forth.When
she rocks in her rocker and when she does her bouncy dance on the floor.
is her last month of therapy with her therapist, well with her PT & ST.She
will still see OT at school but not like we see her now one on one for an hour once a week. The
only continuant will be Music Therapy on Mondays; she doesn’t have school on Mondays so that will work out just fine.We will be very sad to see PT and ST go.They
have been with us for quite awhile now and it will be strange to not have them around.Who likes change????Ok hope I wasn’t too harsh with my vent, I
know a lot of you like to read about Lily and probably not so much of my issues J
wanted to share my excitement with a few things.
I got home from work and saw the note from Sarah, Lily's Speech Therapist, she sees her on Wed. when Lily is home with a nurse.
(She is currently having different nurses come in and out since we have yet to find a steady) Sarah's note said this:
"Lily did well today. Lots of vocalizing. Used eye gaze once to choose between red & blue mylar. Vocalized
for "more" a few times (?) I swear she tried to say "Hi!" when she saw one of the painters coming from the hall!"
Andrew finally had some of his workers come by and finally paint the girl’s bathroom pink; it looks so cute by the way.
It is pink walls with wainscoting half way up the wall, so Pottery Barn I must say.
I am skeptical that Lily actually said Hi but for Sarah to think it sounded like it I have to kind of believe it.
started shaking her head, like no. She does it several times and laughs, like it feels funny or something. I just
love when she learns something new.
has those dang drops but they aren't so often and they aren't in clusters so I shouldn't complain but it makes it hard when
she is in therapy or when we have her in the stander and have her sitting and one strikes b/c it knocks her over.
If she were ever to be mobile she's have to wear a helmet. I guess though, here's to hoping for a helmet.
way, I woke up this morning liking my hair much better. Not sure why maybe it has just taken some time to get used to.
I am used to being very blonde, dark blonde/light brown is quite different. Not that any of that matters.
debating on going up north to Greer this weekend, wanna know why the debate? Andi screaming in the car, it is a 4-hour
trip. See why we are debating. But it is in the 60's there right now, that sounds so heavenly.
July 27th 2005:
So I was
talking to my mom this morning and she said "what a cute picture of the two girls on your site", I said "that has been up
for quite awhile, you are just now seeing it" and she said "well it always makes me cry" so I think it is time to not make
her cry. I will tell you all a little story of my insanity that makes me cry but I am sure that is all who will weep.
So I stay
home a lot with my girls. It is insanely hot so going anywhere unless we have to is out of the picture so it gets boring.
I am very influenced by fashion magazines as well as US Weekly and People and love to see what the stars are wearing and what
nots so anyway, I saw a picture of Mary Kate Olsen and I liked her hair color, a lot darker than my bleach blond hair so I
said hey, I want my hair that color so I tell Andrew when he got home that I had to go to the store for something other than
a box of hair color and get caramel blond, I put on this "caramel blond" and my hair is orange. Not CARAMEL. So
I say I will be right back to Andrew and I run out for another box, this time I get some light brown pretty hair color on
the box and come back home. It is time for the girls to go to bed so I wait for the morning to redo my hair. Well
you would think that sleeping on it would have knocked some sense in me but it didn't. It was and I was dying my hair this chocolate color. After I get out of the shower
to see what I thought would look like Mary Kate Olsen was a purple/greenish red color. It was so scary looking!
I get on the phone and leave a message with my stylist and begging to get in that day. They call at to tell me I can get in at but my problem is I have both girls. So I call my sister looking for some help but she had to take Ariel,
her oldest to the Dr. at 10:10am, she said she could meet me at the salon afterwards to help with my girls so I asked to borrow
another one of her kids to help me until they get there so she says I can take Lindsey and Lindsey's friend (Lindsey is my
sisters niece on her husbands side that they have custody of, I consider her my niece even though we are not related by blood,
she is still my niece) I pick up Lindsey and her friend and we head to the salon. My stylist gives me this look and
doesn't so much lecture me but ridicules me pretty much the whole time. Andi and even Lily are being cranky and I feel
so bad for the two 14 year olds doing their best to entertain. Lindsey did so great with Lily, she fed her, held her
when she was crying and even got Lily in and out of the car for me twice, and she is tiny! My sister shows up with Ariel
at about and they all do their best to entertain my girls but they were
very cranky. I finally get done around 1pm (!) and still not loving my so not Mary Kate Olsen hair color, I pay the
damage $140 plus tip (!) then since I felt so bad my sister and whole family basically had to help me out with my cranky pair
I buy them all lunch $40 then since I am still a bit upset about the color my sister tells me to buy shampoo with color in
it to correct it some and then I go and buy shampoo and conditioner to go with it as well $30 at Ulta III. So my total
was +$200 for a $10 box of hair color. The only good thing I think came out of the whole experience is I doubt my nieces
will ever dye their hair on their own and I know they won't be getting pregnant for a very long time!
I am such
a dork! I know better than to talk, write or even think out loud. That whole sleep thing with Andi was a total
FLUKE! She's back to her evil nighttime ways and I guess that is how it will be for a while. I asked my mom to
watch the girls so Andrew and I can see "Wedding Crashers" but she is busy all the time, she says "how about you guys go to
an 8pm movie on Saturday night put the girls to bed and I'll stay with them while you are at the movie". Well in theory
that is a marvelous idea, in reality it is impossible. Well first off for me to be anyone outside of my house after
8pm is a miracle and although Own Wilson is a cutie, he is not that cute. And secondly little Miss Andi likes to sleep
next to mama. We are working on it though. Just not there yet.
started having bigger drops lately and I can't figure out why. We went to the hippie market and bought a bunch of organics,
like she should be having anyway and some coconut oil and flax seed oil, both I read helps, not necessarily with seizures
but to promote better health and if I can keep Lily as healthy as I can maybe that will help stop these pesky type of seizure
that seems to never go away fully. Now if only someone can feed me healthy foods all day long I could drop these last
stupid 10 lbs! It is my fault I know but I like to complain anyway.
I was looking
back at all my entries and I wonder how people can follow what was happening, especially in the beginning when I started my
journal, I guess we could call this a blog but I still like to consider it my journal. We made so many changes and I
expected everyone to just follow along. I apologize. I also couldn't believe how I just said, "we said goodbye
to Lily" in the entry I made all about her surgery. I can't believe how I wrote that like it was nothing. I guess
I was trying to put a lot of information into one entry and I was more giving facts than emotion and I was 8 months pregnant,
stressed and exhausted. But when I read that I thought how could I have just written, we said our goodbyes to Lily.
Ugh, that was the worst moment of my life. It was just awful. Oh it pains me to think back on that moment.
I just felt broken when I kissed her goodbye, I walked out of the room, held onto Andrew for life and went into the bathroom,
gave myself a few minutes to let it all out and then I wiped my eyes and went to wait in the waiting room with all my family.
That seems like a defining moment in my life and to just poo poo it really bothered me. I know why I wrote that but
I just felt I had to add, 5 months later of what a heart wrenching moment that was and I hope to never relive it ever!
think I need to start running again. You can tell in the entries my outlook was better in the months I was training
for the 1/2 marathon, I think running does a lot for mental health. Maybe I will, who knows. I am lazy.
I am finally
adding some pictures on to both girls’ pages.
July 20th 2005:
Well Lily still continues to do well, you should see her rock in her rocker chair! She kicks her legs and goes
to town, so cute! She still has myoclonic jerks from time to time, some days none some days several, I am not sure what
makes each day the way they are, I think it still has to do with foods. But what do I know? :)
Andi Pandy weighed 16lbs at the doctor's yesterday and was almost 26" long! 95th percentile. My big girl,
all on mama's milk alone. I am so proud; nice to know these things are good for something besides dirty old mens eyes.
Andi got her shots yesterday and of course I have my doubt still never knowing if the shots made things worse for Lily
but since Andi is so on track and she had no negative reaction after the last round, I am pretty safe knowing she will be
just fine and not be a rare case of death from whopping cough. You know with my luck you can never be too careful.
The way she looked at me when that shot went in her leg I thought I would have died right there. I am so used to watching
Lily get shots and blood drawn and everything else and it always breaks my heart but I have never been looked in the eye like
that, it was just like Andi was saying "why mama, why?". Oh I hate how our kids can make a woosie out of anyone.
Especially an already woosie like me!
Lastnight Andi got single grain oatmeal and she didn't seem to be a huge fan but a few bites of that and nursing we had
the best night ever. Well she did. I had her spend the first half of the night in her crib and I couldn't understand
why she wasn't crying so I was constantly going in there, then at her midnight feeding I couldn't get her back in the crib
with out crying and waking up Lily so I took her back to my bed where we both slept peacefully until 6am! I actually
woke before her because again I didn't know why she wasn't up! Yay for cereal! :)
Oh and one more thing Andi rolled over twice from back to tummy! I can't believe how she is growing. I guess
the next milestone will be something Lily has yet to accomplish. How bittersweet that moment will be.
Ugh what a day!Ugh.Where do I start?Well I will skip over the monotonous stuff like meal times, baths and getting my blood drawn when Andrew
got home early and start with Music Therapy.As most of you avid readers know
Music Therapy is in downtown Phoenix, a 45 min. drive from our south Chandler home.Also as most of you know Andi is a car screamer and I dread that drive every Monday afternoon.Might I also add the ungodly heat, 115 degrees with humidity!Anyway
the way there, not too bad I got Andi to sleep before we left so she slept about 30 min of the drive.We get there, drop Lily off and since I had no gas I figured we’d get it while Lily was in therapy.I love going to the QT and getting a cherry lime-aide with crushed ice.We get to the QT, I pump the gas and Andi and I go in to get my treat.She is naked by the way except for her diaper.So all is going to plan
and I thought maybe we should check out Last Chance, it is all stuff from Nordstom leftover, sometimes you can get great shoes
there and we were just down the road.Back up a few weeks, Andrew thought I needed
the electric start for my truck to cool it off before we go anywhere so my truck was recently programmed differently than
I was used to.Ok back to today, I still have naked baby in my hands and start
the car with my keys, I semi shut my door and go around to put Andi in and her door is locked…..weird, I think but I
walk back to my door and even though I didn’t shut it all the way it is still freaking locked!You have got to be kidding me I grumbled to myself and maybe a few extra words I’d rather not share.I go around the car again trying each door like the more desperate I got the doors
would open.I look in my truck and see my wallet, my cell phone and my cherry
lime-aide, I could have swore it was laughing at me.I go back around taking
inventory of all the locked doors, I must have looked like a coo coo bird going to each door and pulling as hard as I could
on my cracked open drivers door, with naked baby in tow.I stand there thinking
ok, what do I do?I seriously just stood there semi hoping someone would see
me and offer their help but I guess I didn’t look helpless enough or maybe the ungodly heat, did I mention that already,
got everyone feeling a little bit selfish.Ok so now that I am dripping with
sweat I realize I have to use their phone and get a locksmith out to help me and have to pay for the help.I go in and share my sob story with the girl at QT and she lets me borrow their phone and the yellow pages.I find someone and they say they will be there in 15-20 min.So I am just standing there at the candy aisle staring at my truck, just waiting and waiting and waiting,
naked baby in tow.Thank goodness the candy aisle and large amounts of strangers
was enough to keep the little one entertained, she was happy the whole time we were there, I sure wasn’t but at least
I can hide my annoyance, Andi not so much.So locksmith finally shows, takes
2 seconds, opens my door, tells me to get my husband to reprogram the truck and tells me I owe him $35 bucks!$35 bucks?Oh well, I get Andi in the car so afraid that if
I shut it she will be locked inside but she wasn’t and we got to Music Therapy with 5 minutes to spare and guess who
cried the 45 minute trip home.Yes, you guessed it, Andi.
Ugh, I am beat.The sad thing is just 6 months ago I had the fire dept. unlocking my doors except
that time poor Lily was locked in and the car wasn’t running, thankfully it was January and the fire dept. didn’t
Ugh, modern technology
July 15th 2005:
I used to be in magazines? I used to walk on the runway. I was in 3 different international Vogue magazines for
goodness sakes and now look at me. Not that I am complaining, well maybe a little, but man has my life changed.
I guess I am thinking about my previous life (like I am reincarnated or
something) because my mom took my niece, Ariel to New York City this week for a nice little vacation for them two. (Wish I had memories like that with my grandma's)
But the thing is 12 years ago I was 14 years old taking a plane out to NYC with my mom but the only difference was my mom
left me there for three months in the care of a 23 year old chaperone and 6 other models under the age of 18. Man if
only reality TV was alive back then that would have been a show! I took the subway, cooked my own dinners (usually Top
Ramon) and went on about 6 go see's a day all around the city and got about 6 jobs the whole summer. I was 5'11" and
about 120 soaking wet! I spent two summers in New York
plus all my school vacations. I remember once playing in a basketball game on Thursday night, taking the red eye and
to NYC doing a model shoot with Arthur Elgort (wonderfully amazing famous photographer) then flying back home that same day.
I think that shoot paid $3500 a day! Then I went back to being a high school freshman. Unfortunately I started
feeling like I was missing out on my high school days and the summer going into my Junior year I decided to not go to NYC
and hang out with my boyfriend whom we ended up breaking up only a few weeks after that decision. Not my best use
of decision making skills but it is what it is. I don't even know why I am talking about this; I used to never
tell anyone I was a model. I remember Freshman year I had to miss a week of school to shoot for Self magazine in Saint
Martin and my teacher, Ms. Felix with the gray bun, asked me to tell the class where I had been and I turned bright red and
refused to tell where I was. When the school paper found out about it they did a story on me and some big girls took
my picture and hung it up in the middle of the courtyard and put holes in my face and said they were going to "kick my a$$",
I guess that is why I never told people about my modeling, maybe I was saving my own butt!
now I am a mom of two. A mom that had to learn the most important things in life were not waiting in line at a night
club but making sure your baby sees the next day. Not what combination would make the best outfit but what med
combo will help my little girl live a life worth living.
wait to hear all about Ariel's opinions of New York.
I know I was scared to death and cried like a baby when I hugged my mom goodbye but she says she cried worse sitting
on the runway for two hours, trying to decide if she made the right decision. She did. I learned so much about life and
made some great friends because we were all in the same shoes, small town girls in a big city and we just didn't want
to get eaten alive. I would love to see them all again and see how they all are and how they all are doing.
I used to see a lot of them in magazines but as the years have gone on I just see one's face still. I bet they all
have moved on, like me and I know that whenever I get upset about the extra 10 lbs. I am packing, the extra 20 I am packing
since before Lily or the smell of spit up on my shirt or the tons of laundry I am doing I have to remember we are put in places
in our life for a reason. As the old cliché goes "what doesn't kill us makes us stronger". Maybe had Lily been
"normal" my priorities wouldn't have changed much, who knows.
a long weekend! We went to San Diego (for fun) on Wed. night, we met up with my parents and my sister with her four
kiddos and we stayed at the San Diego Hilton (adding more money to Paris Hiltons trust fund). While it was nice, I am
exhausted. I am not so sure about traveling with my two. Too much work. Andi is such a little pill and although
Lily is good she wakes up very early and is very loud which wakes everyone else up, I'm talking 4:30am early. It
is difficult making sure she gets her meds at the right time, finding foods she can eat isn't always easy and just taking
her wheelchair everywhere is a lot of work. Thank goodness I had my mom who helped feed Lily and my sister and
her kids to try to entertain Andi so I could get a bite in as well. We went to Sea World and that was fun. I got
burned a bit, found out I have a receding hairline b/c that is what got burned on my head. Pretty much every car ride
was listening to Andi scream and restaurants were a bear. The beach was the worst, note to everyone Little Swimmers
are by no means diapers. I didn't know that and Andi was drenched in her own urine and so not having that. I thought,
well I thought wrong. It is so hard being away from our toys, our foods and just our house. I think it will be
awhile before we do any traveling again.
took the girls so I could relax at the pool for a bit on Friday and that was nice, my sister, my niece Ariel and I laid out
and drank pina coladas (virgin for Ariel). While we were at the pool this little girl walked past with her dad and I
got this weird sinking feeling in my stomach. I for some reason saw Lily in this little girl and I felt overwhelmed
with sadness, I hid it and let it pass but I guess those moments will never stop. I always think I am ok and I accept
Lily for Lily but there will always be those moments and I guess I have to accept that as well. My relaxation didn't last
very long since when I got back to my mom's room Andi was screaming and my mom said she was for 20 min! I put her in
the sling and she was out. I wish this child could just learn some self-soothing techniques.
what is putting me in a bad mood is Lily's upcoming third birthday. Three is such a great, fun age and I will miss that
as well as everything else I have missed with her. I thought having a typical child would some how make up for
all we've missed but it doesn't. I am grateful Andi is well and so strong and full of life but Andi is Andi and
Lily is Lily, nothing can replace all the things we missed.
On a good
note Lily is still doing awesome and she is so full of smiles and laughs we just love it! My nieces and nephew were
so helpful; it was fun watching them interact with my girls.I asked Ariel, 14,
to put sun block on Lily and she spent at least 15 min. making sure to cover her completely and she did a great job, Lily
didn’t have one spot of sun burn the whole vacation.Poor Andi got a little
burned on her arms and I am the one who put it on her!
a lot of good moments on our trip don't get me wrong, I just think traveling while Andi is still so little isn't a great idea.
Oh I gotta
add we had another good mother reporting, we were in the bathroom at Nordstrom, I was nursing Andi and Ariel and my sister
Jennifer were sitting by Lily and a mom/daughter duo walked past and the little girl, probably three, was staring at Lily
and her mom said tell her hello and the little girl got a huge grin and waved hello to Lily. That made me smile.
of July! Last year we were in South Dakota having a good time. Poor Lily was having bad seizures last year but
thank God not this year! I just knew 2005 would have to perk up for us. It started out so dang bad but thank goodness
life is getting more fun. Having Andi has made the idea of us ever having any more kids a definite no but we couldn't
imagine life without her. She still screams in the car, still doesn't sleep real well and still thinks I am her human
pacifier all night but life is short. We are only kids for such a short time and then boom we are adults. I am
not stressing on the rights and wrongs of parenthood I am going to parent the way that comes to me instinctively and not what
a book tells me so.
good today because my sweet mother in law bought me a gift certificate for a manicure and pedicure for Mother’s Day
and yesterday I finally got to use it. Andrew went crazy for 3 hours but do I care, no. Then this morning Andi
is usually up at 5:30am but this morning I got her back to sleep and we slept til 8am! That is the latest I have slept
in a long time! Poor Lily was up by herself for a while but she is a good self-entertainer and she is safe in her bed
so all is well and I feel good.
we let our nurse go for nothing serious, just wasn't giving my Lily 100% and after several chances we decided to look for
safe 4th! I figure since mine will be boring and safe so should every one else’s! Last year we got a "souvenir"
of our fun fourth... let's just say that is why our little Andi is called "our little firecracker."
are still going great. Actually even better than my last update. I said she was having more myoclonic jerks than
I like but for some reason those have almost but stopped completely! She will have maybe one or two head drops a day.
Not clusters of drops just one and then she goes about her day. It is so incredible! She gained a pound and is
finally 30 lbs, which is wonderful since I was getting concerned with her being so thin. Her digestive track must be
working wonderfully too because I was lucky enough to change not one, not two but three poopy diapers today! Well of
Lily's, I got several of Andi's to change as well. That is although not fun for me, it is good for Lily since she used
to go every couple days and they were like a rock. I am sure this is very interesting to hear about, what else can I
say it is better than crying all the time about dang seizures right? :)
so in tune these days with everything. She cries when she is hungry or thirsty! She can finally tell us.
She laughs when things are funny, like daddy tickling her belly or mommy having her jump. She loves to roll all over
the place and still does amazing in therapy!
I had to
let our nurse go for too many reasons to go into on the internet but now we are using fill ins until we find someone more
permanent but tomorrow because it is the Friday before a holiday weekend no one seems to want to pick up our shift so I get
to take bug and crazy Andi into work with me! It should be ok since tomorrow will probably be a slow day in the office
unless I crap up a bunch of checks then it won't be so quite but I think I paid fairly good attention during payroll entry
on Wednesday... we'll see. If you only know me through this website and not me personally I work as a payroll manager for
my dad's paint contracting company and I go in on Wednesday's and Friday's and Lily usually stays home with a nurse and I
go in to the office with Andi, also while doing some work from home the other days. I used to take Lily into work with
me every day until about a year ago when she started getting too big and too bored at work then what do you know I get pregnant
and I get to start over again with a kiddo at the office! :) That is ok; I know how fortunate I am.
that is my boring update for the day... sorry when I think of something more interesting to say I will post again.
June 21st 2005:
My, my how they grow! Andi just turned 3 months on the 17th and she rolled over twice last night from her belly
to her back. I used to get so annoyed at how parents took milestones for granited when my poor baby had to fight just
to learn simple skills. But now I can see how easily it can happen. Everything seems to come so easy to Andi.
Head control, good vision, lots of strength, etc. I am so happy every day she looks at me and smiles because it was
never that easy with Lily but had I never known Lily I would probably be taking everything for granited with Andi.
Lily continues to do well. She still has more myoclonics than I would like to see but compared to life three months
ago, I am not complaining. She is so cute and full of smiles these days. The main road we take out everywhere
is under construction and she smiles every time we hit a bump. Makes mama go too fast down the road but a cop would
surely understand I just want to see my big girl smile, right? :)
We have to go to OT today, I love watching her there, she always does something new and exciting!
June 16th 2005:“The Short Bus”
School is quickly approaching and it has my mind going in a million different directions.Lily will be taking the bus to school starting Aug. 30th 2005.The bus she will be riding on is the dreaded “short bus” most commonly heard about in jokes.I can so clearly remember 10th grade a friend and I was walking to our Spanish class back in
the annex buildings near the special ed classes and I wasn’t paying attention and the “short bus” was backing
up so I got out of the way and said “if I am not careful I will end up on the short bus.”My friend laughed and immediately I felt sick in my stomach.That
“short bus” I made the rude comment about had been to my house every day of my life up until I was 14 or so.I bet that bus was at my house the day I was born picking up my brother.I knew it was an easy laugh and I love for my jokes to be laughed at, even if I had to sacrifice
my beliefs.The funny thing is I can’t for the life of me remember whom
I was walking to class with but I remember making that comment like it was yesterday.I just felt so sick.
I know that so many people make comments about the short bus and most commonly kids make fun of the short bus.I made one comment about it and I knew who rode on that bus; great kids with fun personalities
and huge hearts.So I know darn well kids will make fun of the kids on the short
bus because all they know is that they are “different, weird, not like them”. Now that it is my child that
is riding on the short bus my tolerance doesn’t seem as high.Yes, I know
kids will be kids.But I also know that we as parents can lead our children in
the correct path.There has been several different instances where a parent made
me proud and some where parents make me want to smack them right upside their head.Since Lily got her wheelchair we have heard many comments and some are ok and some not so ok.Here are some examples of not ok.One little boy went right
up to Lily, looked her over and then pointed and laughed.I shot his mother a
look and she didn’t seem embarrassed at all.A little girl at the mall
just stared at Lily and finally yells “why is she in a chair?”Her
mom said nothing, just ignored her daughter.
An example of ok behavior is at the Dr.’s office
a little boy says “look mom she is in a chair” and his mom said “yes and you can be her friend.”I almost cried with that comment.Kids
are going to stare, point and ask why Lily is in a wheelchair and they should.Kids
are filled with curiosity and they have honestly spewing out constantly.Our
job as parents is to educate our children and show them that it is ok that there are kids in wheelchairs and kids that walk
differently and talk differently.These kids need to know that they don’t
have to be afraid or make fun just because they are different.I know this is
all easier said than done but I am asking you parents to take that extra step to educate your kids, don’t quickly shhh
them and change the subject.Tell them that God made kids like Lily differently
and she is still a kid just like you.
I will quietly step off my soapbox now.I just am in fear of Lily’s
future and wish everyone knew what an amazing kid she is and how sweet she is so they would never even think twice before
making fun of her or any other kids like her.My prayer is Andi is stronger than
I was as a kid and she will stand up for her big sister and be very proud of her.
June 15th 2005:
Well I admit I am guilty of not "letting them be little." I have been so looking forward to Andi turning 3 months.
I think newborns are sweet and smell great but having one is just too much work! I love that Andi is now able to play
a bit on her own. She smiles like crazy and can talk up a storm in her own language. I guess it is ok now for
her to stop growing up :)
Andrew said last night that he can't wait for Andi to walk and I can understand where that is coming from. Being
a parent for almost 3 years and never seeing those first steps is hard but I think I can wait for Andi to walk. She
can't even lay in the same place for very long. She rolls to her side and back to her back and back to her side and
already moves all around. I am afraid the minute that kid gets mobile I am going to be chasing her nonstop! I
mean, I pray she walks and does everything she "should" but I can definetly wait for that day. Although finally hearing
"mama" will probably be the best thing I can imagine ever hearing.
Last night I took Lily swimming and it was so fun! She just laughed and splashed and kicked her legs in the water
like such a big girl. She loves swimming! She is just becoming such a little girl. So full of energy and
smiles and just a blast to have around. I am just so crazy about her, I can't wait to go home and swim with her again!
June 14th 2005:
Lily is doing AWESOME! Yay! I am so proud of her. She continues to have myoclonic (small jerks of her
body like when you are falling asleep and you jump) clusters but they are very mild. They don't seem to phase her much
so we'll take it. I would love for her to be completely seizure free but this will do, for now.
In Music Therapy Rebecca said Lily had her best day. Following directions and making choices. Rebecca
says, "Lily do you want to play the drum?" then Lily has to hit a switch if she wants to, she didn't hit it so then she said
"Lily do you want to play the keyboard?" and Lily hit the switch so she let her play the keyboard and she did, well she
hit the keys. This is important because Lily will have to make choices in school and this is great practice.
In PT last week Lily tall kneeled against the couch. The previous week was the first week she didn't scream
and then last week Elaine (PT) even got to move her hand and let her tall kneel for a few seconds on her own! She
is doing so great! We are so proud.
She is more interactive lately and just so darn cute.
Andi is finally getting to be a lot of fun too now and I told Andrew how being a mom is finally fun! It isn't sad
anymore. It isn't oh poor me, I am a mom of a special needs child. Now it is I am a mom to two beautiful girls
both with amazing smiles and skills that make their mama proud!
June 7th 2005:
Just on to add some new cute pictures. Lily is continuing to do awesome! She is still having jerks and drops
and I doubt they will ever be gone but she is still doing great! In the bathtub today I put a washcloth on her tummy
and told her to take it off and she did 2x! In Music Therapy Rebecca said that Lily did awesome, was in a good mood
and even laughed! She is in such fine spirits lately she is just a blast! Today after her bath I blow dried her
hair! It looks so pretty that is why I changed hair cut pictures, the new ones are so much better. We are doing
more floor play with both girls and it is so much fun!
Andi rolled over last night. I put her on her tummy and put her elbows under her and she flipped right over, I
made her to it again and she did. I know it really isn't rolling over unless she does it all by herself but for only
11 weeks old I was impressed!
June 6th 2005:
Well yesterday Lily got her first official hair cut! Her hair had gotten so long, which I love but with the long
hair she had major tangles and with her rolling all over the floor it was always in a messy ponytail and to comb it out always
lead to tears. We had a nice lazy Sunday morning, Andrew and I decided breakfast sounded good, nothing I love more than
to sit and eat breakfast and drink coffee (decaf for me). Andi slept in the sling and Lily actually slept too since
she didn't the night before. So it was nice time for Andrew and me. On our way out I casually said "Lily needs
a hair cut." I have been saying that for months but didn't really mean lets go do it. Andrew heard it as, ok let's
go. In the same parking lot of Mimi's Cafe was Great Slips, I mean Great Clips (the nickname came from an unfortunate
event in my life 4 years ago). Andrew ran in and asked if they could do a special needs kid like Lily and they said
yes. So we went in, I knew this wouldn't be easy. At first we tried with her in her wheelchair while I held her
head but since her hair was such a mess Lily screamed while the lady tried to comb through it. Then after about 10 min
of struggling and Andi crying seeing her sister so upset, I said "why don't we have her lay her head against Andrew's chest"
and that worked wonders. The other gal helped out so the combing got done in half the time and the lady cut her hair
to shoulder length. After realizing I do not want to do this again for quite awhile I said "let's go shorter" and she
got it to her chin! Because of all the struggles earlier it is layered on accident but it actually looks like it should
be like that (if only that worked out for me 4 yrs ago). It is very modern and so dang cute! I tipped the poor
lady 110% since it was a traumatic experience for us all. I was so sad to see her beautiful hair on the floor.
I always wanted my little girl to have long hair but then again I always wanted her in dance class. We have to adjust
or else life would really suck. After the hair cut Lily was in the cutest mood. I can't explain it but something
changed in her like she got something done that made her a big girl. She was just so happy and it was the strangest
thing. She also looks like a big kid now even more! I can't believe how she is growing, she will be three
in 2.5 months.
At home later that day we were all playing on the floor and I got Lily to sit unassisted for a minute! It was so
awesome, she held her balance and did awesome, must be the hair cut! She is the opposite of Samson :) We had a
great day yesterday and had a lot of fun.
Lily hasn't been sleeping lately and has been moody and had a fever on Thursday but nothing seemed wrong like she was
sick so we just let her do her thing but last night after bath time I was brushing Lily's teeth and noticed a lot of blood
came out of her mouth and I looked in there and way in the back a molar was 1/4 a way through. She is finally getting
her 2 year molars and no wonder she has been so sad! I thought maybe they were starting to come but I didn't know one
had broken through already. I just hope we can get the other three over and done with and soon! Poor kiddo!
At least she isn't on Dilantin anymore that made her gums real hard so teething was worse than it already was.
She is still doing great seizure wise. She has drops and jerks occasionally and they do intensify when she doesn't
sleep well but still no grand mal in over 2 months!!!!!
Andi is getting better as the time goes by. She still has her moments but they are more predictable now and she
is on her own little schedule, not one I made for her but one of her own. She can handle being in the bouncy chair or
looking at her bird for longer periods of time and when she gets in her mood I just put her in the sling and she passes out.
I unfortunatly can't take her out of the sling once she is sleeping without waking her so my back takes a beating but she
will nap for 2-3 hours in this thing and I can get a lot done so i will take it.
So that is the fun we are having at the Nothdurft's residence! We are thinking of taking a family vacation to San
Diego, like we do every summer in the begining of July. Should be interesting with my girls but I think it will be fun.
Probably a lot easier than next summer when Andi can get around on her own, God willing.
to a freaking Dr. to take me off my no seizure high. Lily had an apt. at the Ortho Clinic. I told the nurse practioner
that Lily's PT recommended AFO's (braces) b/c her ankles are turning in when she stands. So she checks my little Gumby
out, surprised by how flexible she is and she gets the Dr. He basically tells me that she doesn't need braces b/c she
will most likely never walk. He said by 4 she should have the walking reflex and she doesn't. He said she could
still get it but was doubtful. I am not naive but I also wasn't closing that door just yet, I really didn't appreciate
him helping himself to shutting it for me. I guess I would have been more upset if I weren’t already so used to
bad news from Dr.'s.
it wasn't like when I took her at 5 months old to the eye Dr. and he flat out said, "she doesn't see very well." I
barely made it out of his office before the waterworks set off. Had I known then that was only the beginning I probably
would have "toughened up".
I am not letting that get to me, I have always pretty much known our bug was wheelchair bound and if God has other plans then
great but I know better than to have high hopes for anything anymore.
I got Lily's
medical records from San Diego but until I get me a medical dictionary I have no extra information it all looks like this
hummble mummble watuuku LilyAnna hummbllehuuymbf yawtuku LilyAnna....
ride home from Phoenix was pretty awesome though. Andi screamed the whole way and then on the last leg of the trip Lily
must have had it with Andi b/c she then started to cry inconsolably. "This is not awesome."
and I were on the floor playing, Lily usually seems disinterested in whatever is going on around her and just rolls around.
Well today while Lily was rolling around on her piano mat making music I thought I would put Andi's feet on the mat to have
her make piano noise too and Lily giggled, I thought it was coincidence and kept doing it and Lily giggled again. So
then I decided to have Andi touch Lily and Andi was just eating it up loving touching her sister and Lily took her hand out
of her mouth, a huge accomplishment on it's own her hand is always in her mouth, and she touched Andi's leg over and over.
She then touched my arms and was very intense about it. It takes a lot for Lily to move the way she wants, her mind
and body don't connect on that level so this was obviously something she really wanted to do! I was so proud of her,
then since she is making kissing noises I put Andi's foot on her lips and she closed her mouth like in a kiss so I did it
again and she did it again so I had to try to get one myself and I put my lips on hers and she closed them up and gave me
a kiss and I couldn't get enough and she gave me three kisses. Then she got disinterested again and went back to
her hand sucking but this was so much fun! She really interacted with Andi and me! I am so proud!
having a little BBQ today with my family so that should be fun. It is only in the 90's today so that is extra nice!
Have a good one!
May 27th 2005:
Needs Baby". Thank God for Dr. Sears, because of him I might survive this little blue bird lovin child. I had
this link sent to me the day after I got the book "The Baby Book" by Dr. Sears and it made me feel so much better. http://www.askdrsears.com/html/5/t050200.asp
understood what I am talking about when it comes to Andi, everyone asks, is it colic? No. Reflux?
We tried the Zantac and it did nothing, so no. She is fine when she is held so this is her to a T. Thanks Brooke
for the link, I don't feel so guilty now. I know this kid will not "cry it out" she will never stop, seriously.
I felt like I am this horrible parent because society says your kid shouldn't sleep in your bed and you shouldn't nurse them
to sleep and she will be spoiled for holding her all the time but according to Dr. Sears, who must know something, I am doing
everything right. It doesn't make life with her easier but it does bring a lot of calming to me.
no one thinks I am ungrateful b/c of all my complaining about Andi, while she is high maintenance she is also healthy and
believe me I will take her high maintenance over seizures any day!
to do wonderfully. She has drops but they aren't excessive at all. She is doing well in her therapies and starting
blowing raspberries and making kissing sounds. This means she is using different muscles in her mouth so we are capitalizing
on that and giving her different textures with her meals, last night she ate 2 cheetos on her own. Meaning biting a
piece off, chewing and swallowing it! Please don't think my journal is more about Andi than Lily now I am just sharing
my feelings on whatever happens to be on my mind.
are my thoughts today. At Andi's 3am feeding last night I put on Elimidate; a horrible, trashy show where a guy gets
to eliminate one of 4 girls one by one until there is one left, like The Bachelor in 30 min. except the guy is never
attractive and there are no trips to The Bahamas. One particular girl on the show was 26, my age, and when asked what
her biggest accomplishment was she said making her own costume and winning $1000 at a Halloween party. She finished
the story by showing the scar on her boobs from the rubber cement, nice sentiment I thought. Anyway I was thinking
to myself while Andi is feasting away on my boobs humm... at 26 what is my greatest accomplishment? I'd have
to say my family. I am proud that all we have gone through with Lily and now Andi, Andrew and I are as solid as a rock
and our love is stronger than the day we married. I am so proud that I never accepted Lily's seizures. I tried
to but I just couldn't. I am proud that I pushed to try every med. I am proud that when I didn't get where
I wanted with a doctor I just moved on to another. I am proud that we are getting so close to a diagnosis when I have
been told by so many, we may never find it. I am proud that I have stayed out of the mental institution through all
this and now I am proud that I am mothering Andi the right way by instinct and I am not failing miserably. I am sure
that answer wouldn't get me to the next round with Mr. Unattractive but since I am already married I think that would
automatically take me out of the running. And maybe my accomplishments wouldn't entertain a viewing audience but I am
May 24th 2005:
I knew my hands would be full with two but man, I really didn’t know.
Parenting Lily isn’t really parenting.With her it takes
love, drive and patience, all traits of parenting yes but it leaves out the toughest part.Like discipline and letting it be ok that your child is angry with you. With Lily it is all about love and cuddles.
It is easy, not emotionally but physically, I am not chasing her around, she is not back talking and throwing fits.
I wish to God she was but she is not so I feel I am a great mother to her but parenting I know very little of. When
I think of parenting I think of teaching, discipline, authority.
Parenting is a job that is super hard!I know Lily won’t
be in therapy one day and come out hating me and criticizing my parenting skills but Andi, that’s a different story.Being her mom takes parenting.She is
only 2 months old and I already feel like I am failing miserably.She wont nap
in the day unless she is in my arms, not kidding she’ll be out to the world, I lay her down and eyes open and screaming
begins so I am trained to not put her down.At night she is in our bed and she
likes to nurse all night long.She wakes for a second and needs to nurse back
to sleep, oh and save the comments I know the monster I am creating thank you very much but I am tired and if that
is a way for me to sleep at night than so be it, right.Right?I know this is where parenting comes in and I can’t do it.I hate for her to cry and she knows it.
Parenting is potty training and getting your kid to sleep in their own bed, which by the way Lily has for 3
nights in a row.But putting Lily in her own bed isn’t a fight.It is not traumatic for Lily, just for her dad.Since Andi
is in our bed Andrew has been, up until three nights ago been sleeping in the guest bed with Lily.I finally talked him into letting her sleep on her own.Funny
story about that, the first night she slept in there, daddy wasn’t home so I put her down in there that is how I finally
got him to let her sleep alone do it while he was gone.Anyway, it was about
3am and I was nursing Andi….on the toilet, not uncommon by the way, when I hear Lily screaming her head off.I jump off the toilet, Andi still on boob and I run into Lily’s room, just knowing she is on the
floor bleeding with a broken leg.I figure she must have somehow broken through
all the barriers I set in that bed but she’s not on the floor, she’s not bleeding and nothing is broken she must
have just had a bad dream.We pat her and tell her we love her and she is back
to sleep, I head back to my bed with yes Andi still on boob.
Parenting requires patience and not the patience I have with Lily.There
are different kinds of patience; patience with Lily is waiting for test results.Tinkering
with med after med.Spoon feeding her four times a day.Watching her in therapy not do anything the therapist is trying to get her to do.Patience parenting requires is counting to ten before doing something you’ll regret.Like today Lily had to do a make up session at Music Therapy in Phoenix; a 40min drive for us, the whole
way there Andi screamed.Absolutely nothing wrong with her by the way, then she
sleeps while Lily is in therapy.Wakes up just when Lily gets out, just in time
to scream the whole 40min drive home.Poor Lily had been up since 5:30am and
tried to sleep but could not because of the screaming.Finally at home Lily has
to eat lunch before OT so while I feed her Andi is, yes screaming still because I am sitting down with her while feeding Lily.Then I nurse Andi and thank God she is asleep so she sleeps the car ride to OT but
wakes up when we get there and I have to entertain her and can’t be interactive in Lily’s therapy.And guess who screamed the whole way back home?You guessed
it, Andi.So that is a whole different patience.I was doing my best to not find a cliff to drive off….I guess it is fortunate we live in a valley.That is a true test of patience.I would never in a million
years hurt my child but it is in those moments that I am counting to ten do I realize how some poor children do get abused.
So having Lily and having Andi requires two different types of moms and I need to find that balance and become
that one perfect … well suitable mom.
May 20th 2005:
Can we just stop for a moment and pay ode to the bird? In a world where a car ride brings her to near exhaustion
from nonstop screaming. Where the swing that soothes almost all children leaves her a sweaty screaming mess, we have
"the bird". The little blue bird that flies over her head singing a number of ridiculous songs, the bird that calms
the oh so hard to calm child. I don't know what it is about you dear blue bird but my God bless your little blue soul.
May 20th 2005:
We lowered Lily's Vigabitrin and she is less agitated and actually having less drops. She had two clusters yesterday
which is an improvement. She is still up in the middle of the night but at least she is making up for it napping in
Andi went for her 2 month check up and is 24" (!) and 13lbs. I think she is a peanut compared to Lily at that age.
We are trying her on Zantac to see if her fussiness is due to acid reflux, I guess we will know in a couple days.
Otherwise things are well, nothing to complain about here except maybe the weather. It's suposed to hit 112 degrees
this weekend! I guess we will be heading to our pool for the first time this year.
I think Lily
is such a blessing! It wasn't until her that I knew how gracious people could be. How touched others can
be by my child! In a world of cynics I get to see the good typically more than the bad. You see the bracelet above
this entry? That was give to Lily by a kind woman who makes beautiful bracelets! She read our site and felt compelled.
I think Lily looks like such a lady in it and you can see it on her in the "sitting tall" picture, newest addition.
If you are interested her website is http://eustaciawishes.tripod.com/. Thanks again Eustacia!
having some difficulties right now with Lily and her seizures. We kept upping the Vigabitrin hoping it would stop these
drop seizures but it isn't and it is causing insomnia and severe crankiness so I called her neuro and asked if we can lower
it and he said we can and try the folinic acid. I actually have been trying the folinic acid for a few days now but
see no difference. I just hope lowering the Vigabitrin, although it won't help with the seizures, she will start sleeping
again at night and not crying all the time. So unlike her to be so cranky all the time. That is her sister’s
of Andi she goes for her 2 month well check tomorrow, can you believe it, and I am telling her dr. that she is beyond normal
fussy. I think she must have acid reflux or something. She just screams all the time, wants to nurse then cries
when I do. Every update I do is with her on my lap screaming so my already horrible English is really put to the test.
I am hoping that he will agree with me and Rx her zantac or something. Seriously, she is not normal fussy. I am
curious to see how much she weighs now, I think about 14lbs. She is a peanut compared to Lily. Lily was 18lbs
by 8 weeks!
is happy she smiles and coos and is very interactive. I have been a mom for almost three years and I finally got some
eye contact and interactive smiles.
Lily to a point beyond definition but man is it nice to have some "normal" things to have and look forward to. I think
we have the best of both worlds here in our little home!
a day! Tues. the 10th we went back and forth to San Diego, all four of us. The flight there wasn't too bad.
We decided last minute to take Lily's wheelchair as opposed to her stroller b/c her posture is so much better in it. I
called Southwest and they said it was not a problem at all. Security took longer than expected but we got on the
plane and thank God Andi slept and Lily was good, as usual, we got to San Diego 10 min ahead of schedule and thinking ok this
is going well. Well that was until we had to deal with Avis car rental. Ugh, it was a train wreck! The first
bus driver couldn't figure out how to use the wheelchair lift so after 10 min of messing with it holding up a bus full
of people, some nice patron helped Andrew lift her and her chair onto the bus. That was not the end with this stupid
outfit; by the way it was AVIS car rental. I made reservations in advance for a SUV with an infant seat and safety seat
and GPS. We get there and is there a car ready for us? No. Does the car they give us have any car seats
in it? No. Did it have any GPS system? No. We wait and wait for our car seats and after asking two
people where they are they finally come 15 min later. By then it is our check in time for our apt. and the
dude that finally brings out the car seats doesn't even help us put them in. We were in such a hurry I put Andi in and
Andrew puts Lily in and we finally leave with 10 min until our actual apt. time. I turn to look at the girls and
see that Lily is in an infant seat. Andrew not knowing put it forward facing and poor Lily is hanging on by a seat belt!
She is 29 lbs and 38" in an infant seat that came in a plastic bag saying safety seat. I said Andrew drive as careful
as you can Lily is in a very wrong car seat, one that says rear facing only. I am such a car seat spaz in the first
place. Both girls are in expensive car seats that won't budge if a semi hit us so this gave me a panic attack.
We finally make it to the apt. thank God Andrew is great with directions, we get there at 2:35pm and finally see the doctor
at 3:45pm. He comes in and goes over the results, Rett Syndrome negative, Pryders Willy (??) negative, Angelman's negative,
etc. just like we always hear. Then he gets to the muscle biopsy and says there was an abnormality. My heart sinks,
my mind says "oh my God she has mitochondrial disease, she is going to die, this is it the news I never wanted to" hear but
that is not what Dr. Haas says. Dr. Haas says that she has inflamed cells in her muscle tissue, something he has never seen
before. Something the Pathologist has never seen before either and it is not inclusive with mitochondrial disease.
He said there were elevated levels in her blood that is common with mito but he also said he thinks it has more to do with
whatever is going on with her. Something rare, something that may have never been discovered before. He said there
is a muscle biopsy convention (?) in three weeks and she will be discussed there. I can't believe all these specialists
will be discussing our girl. I can only hope and pray an answer will come out of all this! He also wants to send
her tissue to a specialist at Baylor but her labs won't be ready for another 6 weeks so we have to make another follow up
appointment with him to discuss more results (sans Andi). Some results from Jan. were still not back yet! He did
say he would call after the convention. Who knows maybe Lily's condition will be called Lily syndrome ??? One
can only guess. He said he figured on her being rare and this doesn't surprise him.
So we really
didn't get a lot of answers but to have an abnormal test is somewhat comforting. To have normal results on a not normal
kid is frustrating. So more of the ol' wait and see game.
back to the AVIS place was quick and harmless, thank God considering my child is barley being held in her seat. We are
running late to the airport and turn in the car, the lady barley speaks English so we just sign the receipt that stated
that we borrowed a car for 21 miles and paid $96 with crappy customer service to boot! And it doesn't end there,
we wait for the bus to get us back to the airport and guess who can't operate the lift either? The other well-qualified
driver, only this guy just takes off and makes us wait for the next bus. So finally the next bus driver actually knows
how to operate the lift and we get on and head to the airport. Funniest thing of the whole experience was on the bus
I look up and see a picture of a man in a wheelchair and they say how the will work with any type of special needs, driver
or passenger. I actually laughed out loud, I was also up since 3:30am thanks to Andi so it was a guess what emotion
would come out at that time but I guess laughing is better than crying. I actually had never felt like my daughter disability
was more of an inconvience than I had with the AVIS car rental place. I intend to write a letter when I get a chance
b/c I am so disappointed with the whole experience. And to make a stressful day the most stressful it can be when we
finally get to our plane Andi screams and screams and screams and I think we may be banned from Southwest airlines, just kidding
they were nice to us but I know the plane full of people will probably rebook if they see us coming again. She also
screamed the whole car ride home too but the bright side of it all she was so worn out she slept 6 hours that night!
That was the most sleep either of us have gotten since she came into this world!
So I believe
we are getting closer to a diagnosis. I asked Dr. Haas if he thinks Andi will be ok and he said her head control is
like a 3 month old and she seems like she is very on track and I should try to relax a bit. I said I could only try.
still doing well, we had to add a little more Vigabitrin b/c she was having an increase in drops again but now she is doing
better. This has to be the best month we have ever had with this little girl. Only thing is now that I am not
stressed with seizures I get upset and impatient with her development. I guess when all I was focusing on was seizures
I didn't pay attention but now that I don't have seizures to focus on I feel the need to stress about her vision and development.
Never a dull day for me!
May 9th 2005:
Quick update... we are going to San Diego tomorrow for an apt. with Dr. Haas to discuss the results from all the testing
we did back in Jan. We will be flying at noon getting there at 1pm, renting a car then seeing the doc and flying back
out! All four of us are going so some sanity vibes would be nice! I have a strange feeling there will be a plane
full of people not loving our little Andi. Our return trip will be during her impossible time of the day... oh boy,
Pray that we get some answers but not a yucky one... is that too much to ask???
I bet Dr. Haas won't recognize Lily, she was such a mess when he met her the first time.
As far as Lily goes, he drops are coming back. They aren't super intense and she is still doing her best but the
drops are annoying and tend to end up hurting her. Since she spends so much time on her tummy she hits her face on the
floor, thank God it is carpet but she usuaaly bites her tounge each time making a bloody mess.
I will update with the results.
May 3rd 2005:
Wow, May already! Well this will have to be quick since the little one on my lap doesn't understand why I am not
walking around with her. She is such a busy body!
I think we finally found the right combo for Lily. Felbatol and Vigabitrin/Sabril. She is doing great.
Very mild seizure today and none yesterday. I got her off the Klonopin and she is still doing very well.
She is doing awesome in all her therapies and seems like a new kiddo! We are so proud of her.
We have her go down an incline in OT on her belly and today she went real fast and put her arms in front of each other
in a crawling motion four times!!!! She is sitting better, still not as well as she was before her birthday but I have
a feeling we will get back there, especially as well as she is doing now! I still need to get some new pictures up,
don't I. I will when Andi isn't screaming at me so I guess that will be in July.
Well at least when
you know the other shoe will drop you can catch it.I think taking Lily off Felbatol
while adding Vigabitrin/Sabril was a bad idea.Her drop seizures have come back
and with vengeance.It is almost like she is having her infantile spasms again.Last weekend these started so I put her back on Felbatol and she was still showing
no signs of improvement then I added folinic acid, it is a new trial that Neuro wanted us to try.If it worked it would be very rare and give us a diagnosis.Well
Tues. she had a better day.The drops were less severe and Wed she did pretty
well until that evening when she had a bad cluster of the drops.I didn’t
know if the Felbatol was helping or the folinic acid was helping so I decided to take her back off the trial of folinic acid
and see what happens.I just decided this today, Thursday so I don’t think
we will know for a couple more days.I do know that Lily just had a bad drop
attack and smashed her head into the floor several times before I grabbed her and bit her tongue and her lip and was a bloody
mess.So now I am worried that neither will help and now we are not dealing with
the 10 min grand mals but now dealing with these nasty drop attacks.
It appears that
Lily now has a cold, which doesn’t make anything better, and I am afraid that little Andi Jane has a snotty nose too
which I really don’t want her getting sick.
I am not
sure why Tues. and Wed. were more mild days and then today she had this nasty one.Maybe
stopping her morning dose of the folinic made a difference, who know.I will
give it another day or two and see.
You know I hate
playing Dr. Mom.I barely passed chemistry and biology and here I am trying to
medicate my daughter.Oh if ol Mr. Fraizer could see me now.
Andi Jane has taken
up smiling and cooing.She is so interactive it makes all her hard work worth
it!She is really getting so cute.When
I have some more time I will add some pictures but since she doesn’t like me sitting down and holding her I have to
get up and walk around.Boy am I on a tight leash with this one.
It is so
much easier to update when things are going bad. I guess it is a lot easier to pray when things are going bad as well.
When things are bad there is always that element of hope. The idea that things couldn't possibly get worse but when
things are going well I can't help but wait for the other shoe to fall.
doing AMAZING right now and I am still holding my breath. She has maybe one seizure a day and it is a couple jerks and
it is over with. She is on a full dose of Vigabitrin/Sabril and totally off Felbatol. She is still being weaned,
very slowly off Klonopin. She is kicking butt in therapy and shocking everyone! She is pushing up on her arms,
she never could weight bare with her arms so this is big. She is tolerant of the working hard and even seems to enjoy
it. I have seen the best strides in OT. She just works hard but her therapist makes her think it is play and she
is really excelling. She still has to have her thumb and pointer finger in her mouth and that seems to hinder her development
some but I am not ready to take that away from her just yet.
back to work with Andi, Lily stays with her nurse when I go but it is hard. I only have to go in 2 days a week and do
the rest from home but it is hard when you are going off very little sleep. I only did petty work from home when I had
Lily and didn’t get into payroll until she was 5 months old so this is a challenge but time flies and I know I will
be getting more sleep soon. Andi is doing well. She is 5 weeks old today and getting big! I have her 5-week
picture up on her page. She is getting really chubby on mama's milk! She doesn't go back to the pediatrician until
she is two months old, May 17th. She is still feisty and so far she seems healthy. I guess I just want to see
her hit some milestones before I can exhale but I doubt I will even then. She has given us a few interactive smiles
and I just can't wait to see more and more!
four of us, go to San Diego on the 10th of May to see Dr. Haas to discuss her test results. I asked if we had to bring
Lily if all we were doing was discussing results and he said yes. I don't know if that means he wants to do more tests
or what. We are flying in and out that Tues. since Andrew can't miss much work and I have to get payroll on Wed.
Wish us luck that will be a fun trip in and out of the airport! Yikes.
I stopped weaning the klonopin. I think one wean at a time and she is doing better. By Thurs. she will be
off Felbatol and on a full dose of Sabril. Then next week we will work on the klonopin wean.
Lily is doing very well. She is having about 3 small seizures a day but much better than the 10 min ones.
She is all over the place and is even more vocal! She got her bangs cut and she looks so big! She has also spent
the past two nights in her own bed in her own room! With video monitor on her of course!
Andi is still good and growing like a weed. Still getting up a lot thru the night but hopefully she will get better
eventually. I put a new picture of her up on her page as well as one with Lily's new cut!
Hoping everything stay on the up and up!
April 7th 2005 (I think)
Feeling like I am a hostage in my own home! I was lucky to get laundry done today and a shower! That is a
Lily didn't get her klonopin last night, I am having brain farts these days and she got a higher dose of Sabril today
but she had the most seizures she has had in a week. She had three. Not big ones but still three. I just
hope it is from the weaning of the klonopin and not already getting used to the Sabril. We will see how she does when
she gets her klonopin tonight.
Andi is good, three weeks old today and already 10lbs and 20 1/4"! Ped said I should bottle and sell my mama milk!
She is growing out of her 0-3 months clothes already and in size one diapers leaving me with two unopened packages of newborn
diapers. She has these strange markings on her legs that her ped thinks it is like a hemagotoma (sp?) but something
to do with the vascular veins in her legs. He said we just have to keep an eye on them and hope they don't get bigger.
I told him as long as her brain is ok I can handle birth marks. If she has to see a plastic surgeon that is ok, better
than a neurosurgeon.
Lily had her first noticable convulsion at three weeks and two days old, if we can get past that maybe I can exhale a
bit. Maybe. I hope.
Praying Lily can remain stable as we go up on the Sabril and slowly go down on the Klonopin. This is the best she
has been so I am so afraid it will be over before we know it..... I know always thinking the best!
April 3rd 2005:
This is quick b/c Andi is screaming in my ear right now but I just wanted to update that the Sabril seems to be helping
a ton with Lily!!!
We started it on Thursday and she hasn't had a 10 min grand mal since! She is still having small tonics (rigid)
but they only last a min or less and don't seem to phase her. She is still on a small dose of the Sabril and to see
this improvement already is a blessing! We will take her off the Felbatol once she is on a full dose of Sabril.
Also she has had only a half dose of Klonopin each night and she is still doing well so I think we will be able to wean her
off that one as well.
Andi on the other hand is a bit of a challenge but as long as she is healthy I can take whatever this little firecracker
can throw at me!
Lily is very mobile these days and watching her get around is so encouraging!
Pray this isn't a fluke but a real answer and that she be spared the nasty side effects.
Have to run.
ago I found out I was having a girl and we decided to name her LilyAnna Blu. So many expectations, crazy how life changes.
it is finally safe to say that surgery was a waste of time, money and such a risk to my little angel it makes me so upset.
Lily continues to seize and when she does it is either lasting over 10 min or she will have a cluster of them with in
a half hour. No breaks. I am sad that I can't be there for her as much as I want to be. We've been calling
Andi a firecracker since we found out we were pregnant and she has certainly lived up to that. She likes to be held
a lot and cries a lot when she is not. Lily just takes it all in stride, such a big girl.
our first meeting with the school system and the district of Chandler says it will be fine for Lily to attend the Foundation
for Blind Children. They have to agree b/c they do the funding and the busing. The school that Lily would be going
to if she didn't go to FBC has an average of 14 kids per class! That is too much! Lily will be in a class I think
of 5 or 6 with the teacher, teacher’s aides and therapists. I think the ratio is 3:1. I like that much better.
believe my little girl will be in school in only 5 months. I think it will make a world of change for her. She
needs that interaction.
a new med so we will see if it makes any difference but I am not too hopeful. I don't think anything would make me hopeful
in searching for seizure control anymore. I think it is just the way it will always be.
On a positive
note, Lily is really getting around! She rolls everywhere! Unfortunatly yesterday she rolled into the coffee table
and got a bit of a black eye but at least she is moving, right? :)
March 28th 2005:
It was brought to my attention that it appeared that in my last update it looked like it said Andi was on Phenobarbital
and she is not. I repeat Andi is not on phenobarbital! She is healthy and doing great. I meant that I am
happy to be up with her all night long instead of her sleeping being drug induced like Lily was at only 3 wks old.
My entry made sense to me but I am going off a few hours of sleep and so I may not be all that credible right now :)
I just wanted to share that so no one is freaking out. Andi is so far very good!
Lily is doing well, she just seems sad lately. I don't think she likes Andi, at least sharing me with her.
Her seizures seem to be better lately though but I am afraid when we cut the klonopin again like I am suposed to she will
be back at them again.
Ok back to rest.....
not much time.
doing better but she was getting a large amount of Klonopin at night. Neuro advised us to cut the dose in half and Lily
had a horrible day again yesterday so I gave her the full dose last night and she did great thru the night and so far great
today. She is really getting more mobile, she rolls and some how scoots with her legs. If we could only get her
to incorporate her arms she would be really moving! Her neuro does want to try Vigabritin which is only available in
Mexico and Canada and has some heavy risks. I am willing to try it short term and if we see no change
then she will be taken off immediately. He also wants her to try Folinic acid but finding it is like finding a needle
in a haystack. I am still pretty tired and don't have a lot of time to be searching the internet so that may have to
wait. The chances of it working are slim to none but everything is worth a chance.
as Andi goes, she is doing great. She has a clogged tear duct making her eye all goopy but otherwise she is a pretty
happy baby and only cries when she wants to eat. Sleeping is not so great but she is a newborn. I was fully aware
I would be doing all niters for a few months. Praying for them actually. I don't want her sleeping all night b/c
she is on Phenobarbital! So far everything looks great with her but I think until we get past that 3 week mark I won't
take anything for granted.
us; I really have to get back to the girls! Hope you enjoy the new pictures!
am home and finally updating! I had Andi Jane at 7:26am on March 17th 2005! She is doing great! She is a
good baby. Very attentive and likes to look around. Her head control is already incredible and we think all will
be just fine with her. I still worry with every little reflex she does but I know those are normal. I think I
won't feel totally at ease until we pass the 3-week mark! Her ped said she looked great and I should not expect for
her to have the problems Lily has.
Lily she is doing well. I think she misses our interaction. I can't pick her up yet and it is hard on both of
us. This morning she was on one side of the bed and she managed to get her way on the other side of the bed and she
laid right next to me! Bless her little heart. She doesn't understand but I am trying my best to let her know
she is still my baby. Her seizures are still not great. My mom has had to take her to her dr. apts and therapies
for me and I realize how busy I am watching her! Mom is with her right now at the neuro's office. I gave her a
list of things to ask and talk about. My mom is good though so I am not worried.
mom, Grandma Cheryl helped out a lot with Lily this past week so I have been fortunate. I have had our nurse come too
but Friday will be my first day all alone with the two. I think I should manage but I found it semi funny last night
that I was breast-feeding one while spoon-feeding the other. Hope we can get feedings a little more scheduled so that
won't be too common of an occurrence!
So we are
doing well. Very tired, very tired. This whole update may not make a whole lot of sense but I thought I better
do it since I have already had some requests!
for all the thoughts and prayers!
So glad, it took long enough! I will try to do a quick update since I need to get ready for my last day of work for
awhile! Baby Andi Jane comes tomorrow morning at .
I am feeling
that surgery was a waste of everything. It has been 6 weeks now and she just seems to get worse. Maybe she has
to get worse before she can get better I don't know. All I DO know is that she has gotten Diastat (emergency rectal
valium) last Tues. and again last night. That means she was in a seizure far too long for my likings and I am so used
to her seizures this means they have gone on longer than 10 minutes. She seems to have two big ones a day. Usually one
in the early morning and one in the evening and then is followed by a night full of small tonics (where she wakes up and goes
stiff and cries). It is beyond frustrating and I wish I knew what the next step to take would be.
help, the VNS should have helped, Keto diet should have helped, and surgery should have helped. I think all we are left
to do is accept the fact that with Lily comes seizures and we just have to work around them. That really is the only
conclusion we have to come to. Of course we will still mess with meds but the odds of one working when none others do
are slim to none. We still have our follow-up with Dr. Haas in San Diego and maybe he will have some words of wisdom. I am not giving up but I am also not going to dwell
anymore. That just gets me down and doesn't help Lily in the least.
as recovery goes Lily is back and healthy, although during her recent therapy apts. we have noticed some setbacks I didn't
notice before. She is very sensory sensitive. She holds her left hand in a tight fist. She has no real sense
of balance. OT will be the one we have to really pretty much start from the beginning again. But her therapists
are positive that we can get back to where we were. That would be pretty silly of me to think she would have brain surgery
with no ill effect.
about this site is I lost my guestbook. I am heartbroken over that. That guest book got me thru a lot and I am
so sad to see it is gone. I am not even sure if it is offered here but I will look for a new one. I really don't
think I would enjoy doing this site if I don't have a guest book in it; it is my feedback and support. I will do my
best to get one. I will buy it if I have to.
is the day we welcome a new little one to our family. I am so ready to meet her, smell her and see her hands and toes.
I am so excited to see how our family adjusts to welcome her. I can't wait to see Lily's reactions. I will post
pictures when I have a chance!EDITED TO SAY: Got the guestbook up and running!
Feb. 18th 2005:
I just got word that IVILLAGE.com
will no longer host these free WebPages but they will be moved to another company. I guess it will be the same site
but at a different address, I will do my best to get that info out to all I can. They also say that while they are being
moved over, sites will not be accessible so if you can't find us that is why and again I will do my best to give everyone
a heads up. I hope IVILLAGE will at least redirect for the first couple weeks. It took 2 years to get this site
common knowledge and I'd hate for it to be "hidden" again. I do believe that if you google LilyAnna Blu you will come
to this site so that is a plus, remember that if you cannot find us! :)
Lily is doing ok.
She is still seizing. Not positive they are generalizing but they are still long and still wiping her out when she has
them so I think they are. The RN said that she slept a lot today and that means to me she seized a lot a maybe she didn't
see it all. Lily doesn't nap when she isn't seizing. We went to see the Nephrologists i.e. kidney guy and he was
glad she put a pound back on, back up to 28lbs and she is looking well. We had to take her to get her blood drawn which
she screamed for and we will have the results soon I assume. We just hope her bicarbs stay up and at a healthy level.
I am still upset that they never caught this earlier. I guess I can't wallow about it but man, you'd think if you know
a med causes this condition why not periodically check. Makes me wonder what other side effects could go unknown until
she is sick. It isn't like Lily can say "mama my tummy hurts" or "I am feeling weak and tired".
Oh well..... It is the weekend.
Andrew is visiting Lily's uncle Jeremy, Aunt Annie and Grandma and Grandpa Nothdurft in Colorado and going snowboarding tomorrow. He told me not to do anything too exciting that would throw me into labor.
Goofy daddy! We miss him already!
Feb. 16th 2005:
I teach a kids class at church on Wed. nights and it is my first night back after Lily's surgery. I have to get
their verses prepared and it is usually something I just do. I do it all at work so I just go to google and look up
the verse they are suposed to memorize and print it out, today however the verse jumped out at me and I just felt the urge
to share it: Ecc 4:10 (NIV) "If one falls down, his friend can help him up. But pity the man who falls and has no one
to help him up."
That just reminded me sooooo much of these past two weeks. Andrew and I are so fortuante for all the help, all
the gifts, the cards, the care packages, all the prayers and all the love. We are so fortuante to have such an amazing
group of family and friends and that just hit me over the head. So thank you all so much!
Lily is doing ok. She had a lot of less intense seizures last night when I was home with her. She was in
a much better mood though and so I am not complaining.
Thanks again for everything!
Feb. 15th 2005:
Short update. Today Lily spent the day with her Nurse, Bethany, and it was reported to me that Lily had no seizures
today but she was rather cranky. I'll take cranky any day! She had to get Diastat yesterday (emergency medicine
given rectally to stop a seizure). So it looks like some days are bad and some days maybe not so bad? She is still
cranky and I am not sure why but so glad for a good day. Just wish I got to spend it with her.
I was looking at all the pictures on this site tonight. I usually just update and not look at the site but
man what a pretty girl we have! Seriously, I just love looking back at all the pictures I have of her on here.
I know I need to add more but lately I haven't been snapping any. I will get around to it, promise. She has lost
all that baby fat, she is no longer a baby. She is such a beautiful big girl now!
Feb. 14th 2005: Happy Valentines Day
updates I notice how much I am opening myself up. While it is liberating to be able to speak freely it is also humbling.
I am a quiet person, I don't like to openly share my feelings out loud but typing is another story. I've been hearing
a lot of comments about how upset I sound and I am. I don't have any need to sugar coat what we are experiencing b/c
then it wouldn't be real. Did I want a miracle with this surgery? Yes.
I was skeptical about it which I think is the only thing that has kept me sane but I sure did hope for better results.
Yesterday was a tough day a day just like all the days before surgery. I honestly felt like a knife cut me in two.
Lily's seizures seem to be coming back each day; it was like we had a semi break but each day they worsen. I don't know
maybe it is something to do with surgery and recovery and maybe she will improve as her brain goes back to "normal".
I can't help but feel the whole thing was a waste. We will give it more time, as if we have anything else to do.
update a happy update when we can get a break. I will continue to update upsetting ones too b/c they are a part of life.
Unfortunately, much too much lately.
a day to celebrate love however and the love I have for my husband who gets me through everyday is not mentionable in words.
I have for the most beautiful baby girl in the world can extend to the end of the earth and wrap around again.
I have for this new baby kicking me in the ribs is never ending.
I do know
that even though our life is not what we had planned and it is not easy, I know how fortunate I am to have the husband I have
and to have this amazing angel that I get to call my own.
it is, there is me, open and honest and probably again to be embarrassed!
Feb. 12th 2005:
So I lied. I am updating again. Only because I am mad at myself for cursing the whole thing. Friday,
yesterday, Lily had a grand mal ie: tonic clonic ie: generalized seizure. She had it at 1pm and slept until after 2pm.
She then was fine, a little cranky but fine but then when she went to bed she had another and then this morning while she
was still sleeping she woke up by another! I am so annoyed. She is still sleeping after that one and it is 10am.
I have to leave at 11am and go to a Super Support Saturday sponsered by the Foundation for Blind Children and the Deaf and
Blind School of AZ. The only reason we are going is because my mom has been asked to be a moderator in the Grandparents
class so Andrew and I are going with her and will attend the parents support groups although I don't feel I have a lot to
say right now. They asked my mom b/c of her interesting life with a special needs child and special needs grandchild.
How ever did she get so lucky? Anyway, she likes that type of thing and I wish I could go into her class and watch her
but since I am not a grandma I cannot. It will be good for Andrew to go into the dad's group. Dad's don't get
a lot of support the way us woman do so I think it will be a good thing.
As we prepare for this new little baby I can't help but be reminded of what it was like when we were preparing for Lily.
The classes we took and talked about the "worst case scenario" basically being a c-section, maybe 6 fingers. We
were so young and so unaware of how our life would change directions. We had no idea there was a difference between
a neurologist and neuro surgeon. We thought "it's not brain surgery" was just an expression, not a fact of life people
actually faced. Now as we prepare for this new one, although little has been done to prepare all we pray is she makes
it 3 weeks with out having a seizure. We pray at four months she can hold her head up and bat at objects. Our
expectations are low and undestandibly so I would think, the time is coming to an end and quickly and I fear the worst but
pray for the best. I pray I can still handle all of Lily's needs and she wants for nothing and I pray I can be that
nuturing mom to our new baby that will need a lot of me also. Lily needs me so much sharing will be hard. We have
four weeks and 5 days until March 17th when little Andi Jane gets laid in my chest and our life will change even more but
prayfully for the best.
Feb. 11th 2005:
Life is much better at home! Although Lily is still having her seizures, I noticed yesterday that they don't seem
to be generalizing. This was the whole purpose of the surgery. After the little seizure she isn't wiped out, like
she used to be. She had 4 small ones yesterday and never napped. I have to believe that is a good thing and maybe
things will continue to improve. She had one generalized one last night at bedtime but considering what we are used
to, we can handle that.
She looks great. She is rolling again, she is doing her little "bouncy bouncy" we call it where she is on her tummy
and she bounces. She is back to her hand sucking all day like usual. She still seems tired and not quite back
to normal but considering she had brain surgery not even two weeks ago, we are happy with her recovery. I can't imagine
ever doing anything again to that precious little girl. She is so undeserving of all this. She is eating great
but won't drink out of her straw like she used to so we are working on that again. Not sure if it is a lost skill or
just something she isn't interested in.
I am still feeling rather in a daze and not talking a lot to people and just trying to get back to normal. Maybe
when I am not the size of a house I will feel better, although when I am not the size of a house I will be up every three
hours feeding an infant so not sure if I will be back to normal anytime soon. I just can't believe how much that took
out of me.
I will probably start slowing down with the updates since laying around the house all day really doesn't require much
of an update but promise to keep you all updated with the important stuff.... ie all her dr. apts coming up post op.
She still has to follow up with the kidney doc now b/c of her metabolic acidosis. I will update how that is going.
Feb. 9th 2005:
Sorry for such a late update!Home sweet home!We finally left the hospital a little before
2pm yesterday, Tuesday.After I came home that Friday night, I never left the
hospital and never went into the Ronald McDonald room and there was no Internet connection in the “fancy” ped’s
floor!Anyway, I don’t think anyone would have liked to read what I would
have said; needless to say things have been very up and down and frustrating.
So where did I leave off?We were in our last room
of our trip, the isolation room.Our poor little roommate was very sick and we
were sad for him.We hope little F makes it home and real soon.We are worried about him.
That Sat. it was pretty much just me and Andrew, and of course Lily.Andrew decided to play softball that night, which was a good idea, he needed a mental break.He left around three and it was just me and the bug for the rest of the night.Things were going alright, Lily was finally eating again and seemed like she is feeling better. She was real sick Thursday and Friday and cried both those days.Around
5 or 6pm though she had a major wopper of a seizure.She actually desat, in other
words her o2 levels went below 80!She never desats with seizures!It lasted 6 min on the dot and she had to get o2 for a little bit until it was back up at 100.I was upset to say the least but she was still sick, it was the first bad one in several days, just relax,
unfortunately I didn’t believe what I was telling myself and rightfully so b/c she ended up having 5 more that evening,
each with less intensity but still just like our pattern at home.I called Andrew
just crying.Why, why why?????? Sunday turned out to be worse.We thought, what the hell?Why is this happening?Why was she ok, Wednesday, Thursday and most of Friday?Well
we thought, she didn’t eat those days.Could food be the problem?We’ve always thought there is something to do with foods but the keto diet never
kept her seizure free and that is the whole concept to keto, your body is basically starving.Well we tell the weekend on-call neuro our speculation and she says well maybe we should try keto again.Oh boy, here we go again…. She gets it all set up, Lily just has some meat for dinner to get her
ready and we go to bed.
Monday morning no breakfast for the bug, the dietician comes in to say we will start her with the
eggnog and whatnots and go from there.We wait and no food for Lily still.She was looking her best that Monday though, eyes bright and beautiful.Holding her head up like she never had any issues with holding it up.She looked fabulous and we knew she was going to be ok.Before lunchtime
rolls around the neuro on call for the month of February comes in and we tell him about the seizures and starting keto and
he says no.She cannot start that diet after this huge of a surgery.This kid needs vitamins and minerals and can’t lack anything right now.Oh ok…. Well then can she eat?Yes, feed her.So Monday she is back to eating, she ate a lot and seemed happy to be doing so but ended up going all day
Monday with just a small seizure in the Am and one at bedtime.They also put
her VNS back on which made her cough forever.I guess she forgot what it felt
So finally Tuesday we go home.They send out us with
tons of new meds; Steroids to taper for the chemical meningitis, antibiotics for the UTI, sodium bicarbonate for her metabolic
acidosis plus her usual seizure meds.They gave us a script for thrush meds that
she got from the antibiotics but I know that Gentian Violet does the trick, just a bit messy.She got a bath when we got home finally and looks great.Her incision
will not be easy to hide for a few weeks but like I told my mom if someone has a problem with it they can just kick dirt!After we got home and settled she had another seizure and tons afterwards during her
nap.I am not sure what to think or say.I am obviously frustrated but maybe it will be every other day?I don’t
know.I know we can’t give up hope again but man did I really hope this
would be it.Neuro said some kids are just stubborn and nothing works and I am
afraid that would categorize our Lily.
Anyway, we are home.We will stay home, Lily isn’t
going anywhere for some time, we want her to recuperate.She is looking better
every day though.She is so beautiful.My stomach still turns in knots when I think of what we did last Monday the 31st of January.I think that was the worst day of my life and to ever relive it again would kill me.
We still have a long road to recovery so keeping us in your thoughts and prayers would still be
appreciated.I will come back to the living world soon, still feeling like a
Thanks for everything this past 10 days.Without all the love and support we don’t know where we would be.
I got some sleep last night! Daddy took over for me and let me go home! I took a long hot shower and shaved,
started to look like a hippie, and slept from 8:30pm to 7am! I think I can now handle this upcoming weekend. Although
we just got slammed another complication.....Influenza B! Yeah, I knew I was feeling pretty sick but not that sick,
they checked her snot and an hour later came in and said "she has influenza B, she has to move now." Now we are only
sharing with one other little guy but anyone who comes in the room has to put on a gown, gloves and mask just to touch these
kids. How sad is that? I understand but it is really sad to see people get all geared up to touch your child.
Our nurse yesterday was nice she didn't gear up, she said she has been seeing her all day with out so why do it now.
I felt better knowing that is the reason she isn't eating and drinking but I also feel awful since I should have done better
at staying away..... she cried the entire day yesterday and never ate anything besides a couple bites of chocolate ice cream.
They said they just want to see her drinking and we will be able to go home. The ped said she was in the worst of it
yesterday so I am praying she feels just a little bit better today. Seems like we are getting different responses from
everyone. Some say Monday some say this weekend. The kidney guys say they aren't the hold up, she can continue
to take the sodium citrate at home and stay on it while she stays on the Topamax. If she comes off the Topamax then
we can take her off the citrate but she has to take it while on Topamax. They do not feel the metabolic acidosis was
something she has always had because she has grown so big and metabolic acidosis can stunt your growth. She wasn't eating
for about 2 weeks before surgery and she had lost several pounds. Wonder how long that would have gone on if she didn't
have surgery. Unfortuantly Lily did have her first seizure last night after I left but Andrew said she was only tonic
for 10 sec then she was spacy, nothing like her old ones and we know this isn't a cure for her seizures entirely so one
in three days and it being small and while she is so sick, not all that surprising and we are still staying positive.
We knew going into this she wouldn't be seizure free so we are really above par as we speak.
So I am ready to head back in, I almost miss our room with 3. One didn't speak English and didn't watch tv and
the other just did crossword puzzles, so I watched whatever I wanted to but now in this room we seem to be watching la telivad,
whatever it is called, I wouldn't know I don't speak Spanish. At least in July when we had the tv hog and all she watched
was BET at least that was in English. Oh well I have a ton of books, it is Andrew I am worried about and wonder what
he did last night!
Lily also has a nice case of thrush. I think my advice is stay away from elective surgery in the middle of cold
and flu season. I think had we done this in the summer a lot could have been avoided, but I would have not waited until
then so we have to just deal. We are at the end of the road I know. I am back to cuddle my sweet baby girl!
Feb. 4th 2005:
Boy oh boy..... man I feel like we really moved on down to the west side to the crack shack jail house in the sky!
We are on the peds floor now and let me just say I think prisons are more accomodating. We have 3 patients to a room!
I get to sleep in a chair in front of Lily's crib, yeah she is now stuck in a crib instead of a bed. The nurses here
are one to every five patients and I can't even get a breakfast tray that I have asked for let alone a glass of water.
Thank God my mom came by to let me get out of the prison. They have a nice Ronald McDonald room with computer access
so I figured I'd do this now b/c I don't know when I can come back in here.
Lily is coming along. She is doing well as far as surgery recovery yet this acidosis problem is holding us up.
They are treating her UTI with antibiotics and she is still on the steriods. Lily is refusing to eat or drink so she
is back on IV fluids. I tell her the quicker she eats and drinks the quicker we go home but so far that hasn't been
a deal. She is so sad, she has been crying all morning. I can finally hold her so I have been sitting in my chair
with her on my lap. I am glad we can snuggle again. They haven't offered her anything for the pain, it really
sucks here on the peds floor. I mean, I planned on another room mate but not 2! Look's like we will be watching
the super bowl from our lovely prison room. I just want to take Lily home! I can give her all her meds, I know
for sure she will rest better there. She just needs to be eating. I think she got my nasty cold which is making
it worse. This has been one of the longest weeks in my life!
I am getting impatient and I really want to go home so please pray that she just starts eating and drinking and her acidosis
problem clears up, or it is just something we can deal with at home!
Sorry this is a negative update, it has just been a long time to go without sleep, and not to mention being 8 months
Feb. 3rd 2005:
Well things are good but not great. It seems like each day brings on a new problem. Yesterday I was unpleasantly
surprised to walk in Lily's room and find her getting an u/s. My mom was with her for just awhile so I could run Andrew
to pick up his car and boom, something new. They were concerned with her aciedosis causing problmes with her kidneys
and bladder. The kidney doctors think it is from the Topamax and the neuro's think it is from something else.
We don't know what the problem is but apparently her bicarbs went from 12 to 17 with the treatment so they will continue to
treat her and see. They are weaning the steriods and see how she does. She got her drainage tube taken out of
her brain and her cath out because she now has an UTI. She is no longer on the IV for fluids and they are no longer
giving her Morphine for the pain, it is now Tylenol. She is incredibly cranky and seems to be in a lot of pain.
Her left eye is totally swollen shut and we are hoping today is the worst of the swelling and it should start to come down
within the next few days. They are still closely checking her urine (which is hard now with out the cath) and her blood.
She is getting antibiotics for the UTI. She has been awake for 5 hours which is the longest stretch she has gone but
she is crying a lot and is so very sad. I am hoping she will fall back asleep so she can get some more rest.
We are so thankful for all the gifts and cards. We have enough snacks to last a lifetime! Everyone has been
so thoughtful and caring and we know how fortuante we are to have such a large group of wonderful people who love us so much!
I really don't know if we could have gotten this far without the support. I am hardly left alone around here, usually
just when I am sleeping. We are hoping to head out of the PICU sometime, this week hopefully. I know she is on
the right path but several things seem to be holding her up. Oh and one more little detail that I am scared to write
out..... Lily hasn't had a seizure since Tues. night with that fever. This is the longest she has gone with out one
in months! I really am expecting them to start anytime now. I never thought this would cure her of seizures but
hey we will take what we can get. At the very least it makes us more comfortable with this decision we made. It
is really hard to see my baby girl like this and it takes a lot to get through all this but it is already Thursday, Monday
seems like a long time ago so I can only hope and pray that it just continues to move along and we are home in no time.
Thanks again for all the support and prayers.
know many of you are waiting for an update, I have tried to contact people but I know my girl is loved by many and I can’t
was rough!I won’t lie we had a lot of stressful moments; moments that
made me want to cry, scream, give up.They took her back at 7:30am after checking
all her vitals.We were concerned because she had a low grade fever on Sunday
but during pre-op she didn’t have a fever and she looked all ready for surgery.They had to do an MRI first before surgery which I didn’t know until Thursday night so I was making calls and
running her to Phoenix Friday to get her VNS shut off.So they
take her back at 7:30am, we kiss her goodbye and wait, and wait and wait.In
the waiting room around 10am the operating room nurse calls to say they had just gotten started (!) that was frustrating to
say the least but we just kept on waiting.We had a lot of support that day,
my mom, Andrew’s parents, my sister and niece and my aunt all stayed with us the whole time which kept us entertained
and not so stressed.By noon Dr. Rekate, the neuro surgeon came in to say he
was finished, he “needed a break” and they were closing up, should be another 30-45 minutes later.Well two hours later I asked the volunteer to find out what the hold up was and she calls the OR to hear
she is still in surgery.That is what made my stomach turn, luckily only less
than 30 min later they call to say she is in recovery and they will ask for me if needed.Well they never asked for me, they called over an hour later to say that she had several big seizures they had to stop
and an extremely high temperature they were trying to get under control.When
we heard seizures we were heart broken, we couldn’t believe it.They said
they were tonic clonics!That is what we were trying to stop.We had a serious case of sick stomach to say the least.When
we finally get to see her after 4:30pm she was so sad.She was in a backwards
c position that she wouldn’t come out of.We tried to reposition her but
she would scream and go back into that position.Her fever was sky high and not
going down.The neuro surgeon came in around 7pm and couldn’t understand
why she had the fever and was baffled.We were packing her with ice and Tylenol
but it took until after 2am to finally break the fever.Also at 2am I woke to
see she had pulled her IV out of her hand and blood was everywhere.We had to
change her bed sheets, clothes and they decided to weigh her at the same time.She
was so not happy with all that!She had several seizures after the 4 in post
op that evening so needless to say it was a rough night and I couldn’t help but think “what did I do”?
was not something I got much of last night because she cried every once and awhile and I kept getting up to check on her.
7am this morning Dr. Rekate’s Nurse Practitioner came in and saw Lily in that backward C position and was immediately
worried.After a discussion with other surgeons they decided to treat Lily for
“chemical meningitis” with steroids.After 9am she was still cranky
but much more Lily like.She wouldn’t freak when we changed her positioning
and she was lying normal.We figured whatever happened she was better.After 10am she had to get another MRI so she had to go under general again but while we were wheeling her
down to MRI she found her hand.Lily is an avid thumb/finger sucker and she hadn’t
done it since the surgery so we were pretty happy to see her do that again.
MRI she had an EEG since they were worried since she was so lethargic she could be having sub clinical seizures that were
weren’t seeing.Long story
short, MRI great, EEG good, the EEG showed slow brain activity but no seizures.We
were thinking things are going well and then we find out that Lily’s blood count was low and has been low since last
night.A blood transfusion may be necessary.We are still waiting to see if that is still necessary or not.The most
recent blood test a few min ago said the levels were rising so we will wait for another test later this evening.Lily’s blood is also acidic so we are giving her a bicarb supplement to help that situation.Unfortunately within the last few hours her fever reared its evil head again and after
a day of no seizures she had two tonic clonics but her fever is 38.5c.Last night
they only time she seized was during her high fevers, we are praying that if she isn’t febrile than she won’t
be having these.All we can do is hope and pray.
are no way out of the woods yet.I am surprised with all these complications
she is having, so unLily like.I just want all this to be over already!I want us to be home and her in recovery.I
hate seeing her in so much pain, I hate a tube running out of her head and neck and I hate the scar across her scalp!Praying she pulls through, that her fever breaks again and for good this time and
praying whatever is needed regarding her blood is done and goes without complications.
will do my best to update again.Please continue to keep us in your thoughts
Since I wrote this in word last night hoping to connect and copy and paste, it is now Wed. morning at 10am.The fear of needing a blood transfusion has past and her fever is gone.She is very swollen but more awake, although only one eye is open right now since the other side is so
swollen.She has been given the green light to actually try to eat something
today beside jell-o.They will take the drainage tube out today if the fluid
comes back ok.She still cries when she coughs or when we move her head.I am sure she has a massive headache and she is still receiving steroids for the meningitis,
bicarb supplement for the acidosis, motrin to try to keep her fever from coming back, morphine for the pain and her typical
seizure meds.We are hoping today is a better day than the last and things continue
to improve.I am thinking either tomorrow or Friday she will be moved to the
peds floor.Although I like having our own room with its own private bathroom
is our update for now.Thanks for the continued support and prayers.
Jan. 29th 2004:
Well surgery is two days away. I am so nervous but know it is necessary. Lily is back to screaming for at
least a half hour nonstop after her big grand mal seizures now which is frustrating for her and for us as well. There
is nothing we can do to console her and when she finally falls asleep she is woken up with about 3 seperate tonic seizures.
I really wish there was another way around to seeking seizure control but apparently there is no other way.
We are just asking for prayers that the surgery is a sucess and goes with no problems and most of all that the same Lily
is there when she wakes up. Well the Lily without these big bad seizures that is.
Surgery is 7am Monday morning (1/31/05) at St. Joesph's Hospital in Phoenix, AZ.
Please pray and send all the positive thoughts you can muster up
Jan. 24th 2005:
Our San Diego Adventure:
We are glad to be home, it was a long week, I will share with you all day by day.
Monday: we left Phoenix around 1pm after getting Lily's new wheelchair and Andrew had some errands for
work he had to run first. We get to San Diego after 6pm and get to the house we are staying at and unload. My
dad's business partner Mike and his wife Kim have an amazing home on Coronado and we were so very fortunate they let us use
the place that week. We got settled in and went to bed early.
Tues: We had to be at UCSD Medical Hospital at 8:30am and Lily wasn't to eat after midnight nor take
her meds, what a day that turned into. She had to do a gluclose test (just like they do when you are pregnant) only
difference between me taking the test and Lily taking it was she actually liked that stuff! She did the gluclose test
for 3 hours and then did a frutose test for 90 min. It was past 3pm when we left our hospital room (still no food or
meds in the child) and headed to the pre op apt. By 3pm she had 2 seizures and during our pre op apt she had another.
We just had to discuss everything since she was going under twice once for the MRI/MRS and for the muscle biopsy and spinal
tap. After that apt we had to head to Children's hospital about 10-15 min away to meet with Dr. Haas. By this
time it is after 5pm and Lily was now on missing her dinner meds too. She had 2 more seizures before she got to meet
Dr. Haas who was great. He was very thorough! He mentioned a ton of test he wanted ran on her and mentioned things
I have never heard of. He said Lily fits the criteria for Rett's and said there is more in depth testing they can do
that they couldn't do 18 months ago. He also said though during her exam she didn't follow/track objects and most Rett's
kids do and her pain tollerance was rather low and that isn't common with Rett's either. She cries rather appropiately
and I guess most Rett's kids don't(?) I don't know. He also said she really fit Angelman's syndrome and just because
the chromosome FISH test came back negative didn't mean she didn't have it and he wanted to run another test on that.
He also listed about 7 others that I am not sure what they were. I asked him if any of these tests came back positive
would that change her seizures and he said only two and they were very rare and he thought we should go through with the Corpus
Callosotomy. She went into a huge seizure for him and I explained she does that all the time and he said the surgery
is a good option for her. He also turned off her VNS since she was going in for a MRI the next day. He ended up
spending over an hour with us and seen us until past 7pm! He gave us a huge script to take to the labs the next day.
Wed: MRI/MRS day (a MRS is an MRI but measures the chemicals in her brain, never done before) we had
to be there at 10:30am and again no food past midnight. She could however get her meds so her day was much better.
They didn't get her back until 11:30am and the procedure went without a hitch. She was rather sleepy though after the
anesthesia and we had to wait a while for her to wake up. We were finished after 1pm so we ran to Applebee's for lunch
were we all three ate and she got her meds. She had gone that entire time with no seizures. After we ate we had
to take her to the labs at Children's and there she had 8 tubes of blood taken and had to give a urine sample too. The
tech put the bag on her under her diaper and then she was drawn. We had to go back to Dr. Haas to turn her VNS
back on so we told the labs we'd be back with the urine. We walk about half a mile to Dr. Haas clinic and his nurse
said the lab forgot another tube and we had to go back to get it drawn again (it took two pokes for the poor kid already).
Dr. Haas quickly turned on her VNS and we were headed back to the lab. She did go potty so they got her urine sample
and they poked her one more time. It was after 5pm when we got to retire for that night. I forgot to mention it
was in the 80's that day! Far warmer than Phoenix in January!
Thurs: We had to be back at UCSD at 11am for her muscle biopsy being performed by Dr. Haas. The
PACU (post anesthesia care unit) was were they were going to do the surgery but it was full so they didn't get her back until
after 2pm. She luckily did get her meds but again no food. The surgery was 2 hours long and Andrew and I went
for a walk and enjoyed the San Diego weather (it was cloudy and cool). When she was finished we went back and saw such
a cute little girl laying in her bed looking sad. She recoved very well and drank her apple juice and we took her straight
home. She seemed to be in much more pain this time around. She again went all day with out a seizure and didn't
have them until late evening and early morning, which is a give in every late night and early morning.
Fri: Finally all done! We went for breakfast but kept things easy since Lily was hurting.
She cried everytime she rolled over on her leg and whenever we picked her up. She stayed in her chair most of the time
to keep her from rolling on it. We decided to go to the beach for a bit and it was very chilly so Lily and I just cuddled
in a blanket and enjoyed the sounds of the ocean. Daddy got in trouble for flying a kite in an airplane pattern.
That was fun to see! :)
Sat: We tried Sea World but that didn't go so well. In the parking lot Lily had a massive seizure
and pretty much cried and slept the whole day. During her naps she would have another seizure and they day was pretty
much a bust. Plus during the Shamu show the sun left and brr did it ever get cold! We even paid too much to "dine
with Shamu" and Lily slept through it all! We left pretty much after dinning with Shamu and Andrew and I thought it
would be fun to just drive around, well we ended up in Tijuana, Mexico and drove in those crazy streets for about 20 min and
decided to turn around and go back to the US, yeah right! We were in line for over an hour and boy was that line interesting!
There were people trying to sell us everything from Jesus on the Cross, to necklaces, to panchos to a guy selling tacos from
a taco stand in the middle of the street! Andrew jokes that we went to Mexico and all we got was our windows washed!
Anyway that was intereresting, Lily of course slept the whole time there too.
Sun: We got free zoo tickets from Dr. Haas office and decided to go early before Lily had her noon seizure
and we had a nice time. She seemed to enjoy the weather and the atmosphere, what a great zoo that is! We stayed
until her right on time noon seizure and headed home. We arrived after 7pm, just in time for mom to see Desperate Housewives!
Summary: San Diego's weather is unpredictable. Oh a Lily summary.... we won't have any results
for at least three months and Dr. Haas would rather us come to his office for a visit, so we will try to figure out what we
will do, take the baby or not but we will shoot for early May. He said we will have questions and over the phone is too hard.
We were curious by that, does he suspect something but is waiting for the results first? He did say he really didn't
think it was mitochondrial since most kids with it that have the early onset seizures have severe medical problems by 2.5yr
old. We don't know what he is thinking but will do our best to patiently wait these next few months, it isn't like we
don't have a lot going on anyway to keep our minds busy!
We will go through with the surgery next Monday. I am so nervous but watching her seize like she is, there really
is no alternative. So I think we got what we wanted. He was great and really knows his stuff and I am grateful
that we saw him (he saw Lily) and we got to do this befoe the surgery.
Please keep us in your thoughts and prayers, I am so nervous for next Monday, I feel like puking everytime I think about
Sorry this is so long but it was a long week!
Jan. 7th 2005:
Happy New Year!
Well thankfully we got our apt. set for Dr. Haas in San Diego. We go the week of the 17th for several tests, we
are planning on staying an extra few days to enjoy ourself and take a break. Maybe Sea World or the zoo? Lily
finally gets her cool new pink wheelchair next week so at least we have something nice a stable for her to use during that
stay and from now on. Her stroller has about had it! That won't be handed down to the next one, Lily wore that
Surgery has been scheduled for Jan. 31st and it looks like it is inevitable. Her seizures are very severe and no
med combo has helped, no special diet has helped so we are left taking that drastic measure. I even emailed Dr. Haas
about this coming apt and her seizures and the surgery and he was quite honest about her most likely still needing the surgery
that he won't be able to stop her from having it but he would love to overlook her and see if he can't diagnose her.
Praying something will come of all this. I've worked so hard to get her into this place!
So 1/17-23 we will be gone. 1/31 is surgery and we will be in the hospital for a week or so if all goes well.
3/17 the baby comes. This will be an interesting winter/spring to say the least.
My prayer for this year is Lily recovers well and the new baby is healthy and Lily's seizures become under control and
we can let 2005 be full of regular life stress not this extreme stress that the past 6 months have been filled with.
Please pray this trip to San Diego brings some answers and this surgery goes well and is sucessful.
I will update before the surgery I am sure.
Dec. 28th 2004:
Well seizures are still out of control and lasting longer and longer it seems. I got to speak with the neuro's
RN and she spoke with the neuro and Lily is now going back on Klonopin (Clonazepam) to help us get through this month.
Surgery got pushed up to Jan. 31st and San Diego called to say we may not get in until Feb. I said that won't work with
surgery so she was going to do what she could. It is pretty obvious we won't go Jan. 10th as planned but maybe crossing
everything the 17th. We are pretty sure she will have the surgery if she goes to SD or not. She can't go on like
this and mom can't go on watching her like this. I am just praying the klonopin will give her a much needed break although
the drug will make her tired I really don't care right now.
I will update when I have more news.
Oh and as far as the baby goes the c-section will be March 17 2005! Holy cow that is getting up there! And
some people have been asking about showing my growing belly so I will put a page in for that :)
are just coming back and with vengeance. I think she was doing ok had only to do with taking her off the meds and it
was like a calm before the storm. She was having up to huge tonic clonics (grand mal) and crying for hours afterwards. I called her neuro who put her back on Zonegran,
now she is on Topamax for her myolclonics (jerks, is what we call them), Felbatol for her Atonics (drops) and the Zonegran
is "supposed" to help her tonic clonics but it doesn't. These are the worst kind, since her 30 sec tonic phase she doesn't
breathe, then she goes clonic and has jerks every few seconds then she goes tonic again and then jerks for up to 7 to sometimes
10 minutes. It is not only sad for her but incredibly hard to watch several times a day.
be going to San Diego but now not until possibly the 17th. They keep pushing
it back and now we have her surgery scheduled for Feb. 9th 2005. I am scared to do surgery but I can't watch her seize all day every day either. She no longer can sit
unassisted. She is rarely vocal like she used to be and she doesn't even roll all over anymore she just lays in the
same spot usually. It is heartbreaking to see her like this and we know we have to do something.
I am crossing
everything and praying we can get some answers in SD and won't have to do the surgery but knowing that we are let down every
time we try to do something, we don't have a whole lot of faith and pretty much plan on surgery.
San Diego said
that the apt may be pushed into Feb and I said it can't that we have surgery scheduled and she said they will do what they
can to get her in sooner.
the surgery to be over with and her well on her way thru recovery before the new one comes since I need to give Lily 100%
of my last update was the night my Opie (Mat Diepstraten) passed away. It was sad to see him go but we knew his time
on earth was through. We will miss Opie dearly.
you all have a Merry Christmas and Happy New Year and I am really hoping to a happier less stressful 2005 with less seizures!
December 7th 2004:
Well no thanks to our Neuro I got Lily down from 9-10 medium size seizures a day to 2 big ones a day and one during the
night. I am not sure what is worse b/c these big ones take a lot of out her and she tends to end up crying a good half
hour to hour afterwards but she is learning new skills like she is constantly drinking from a straw now and her head control
is much better so I have to believe she is doing better not having them all day long.
I ended up taking her off two meds myself and now she is only on two. She hasn't only been on two in a long time,
at least a year I'd say. I also had her cut back on sugars and trying to just give her natural sugars (from fruits and
veggies) and no nutrasweet (!) I have read about it making problems worse for kids with seizures and I have noticed a
difference once she stopped getting it.
We should be going to San Diego Jan. 10th, we can't bet a airline ticket on that date but it is pretty set.
We hope we can get some answers and maybe some relief there. We are also hoping for nice weather and enjoy being in
San Diego a bit too, like the zoo or Sea World, we will leave it up to Lily.
My due date is quickly coming so we would like to do all we can for Lily before I am stuck at home for awhile, although
OB says no more traveling so shhh, don't tell him.
We are holding off on the surgery. She is doing better and maybe Dr. Haas can help even more so I can schedule
brain surgery just yet, the thought scares me silly.
Hope you enjoy our version of Christmas pictures, we'd rather do them at home than deal with a studio that doesn't "know"
The holidays are coming fast and I hope you and your family has an enjoyable not too stressed holiday season!
November 12th 2004:
Dr. Haas in San Diego read Lily's records and has some recomendations and wants to see her (!). Now we have
to wait for the insurance approval who knows how long that will take, thankfully our insurance is good and they have been
very good to us so it shouldn't be too much of a hassle but with them being out of state it does make things a bit more complicated.
With the holidays they didn't think they could get her in until mid Jan. but I am hoping for something sooner. I will
keep my fingers crossed and pray we can do it sooner.
We met with Dr. Rekate the NeuroSurgeon who did Lily's VNS and he calmed a lot of my nerves and we are seriously considering
doing the CC surgery. It will be a nerve wracking 4 hour surgery with her in PICU for 2-3 days then another couple days
on the Peds floor. They will only shave a little line in her hair and the scar will be minimal. Although it is
brain surgery the risks seem rather low and we feel we have no other choice because she can not continue going the way she
is going. So unless Dr. Haas has that miracle we are looking for but doubting he has, we will schedule that surgery
for most likely January sometime after our stay in San Diego.
Continued prayers are appreciated as we go into some serious situations to get rid of these nasty nasty evil seizures!
Oh yeah, Lily is going to have a little sister! We were shocked, we were sure it was a boy but nope Lily will have
a little sister! :)
November 2, 2004:
Well unfortuantly no new isn't always good news. Lily is actually worse. She had 7 grand mals yesterday
and I took her to her neuro who got her in for us and he wants her to stay on this new med a few more days at a higher dose
to give it a proper chance but she's been on it for two weeks and just getting worse.
He is also now recommending a Corpus Callosotomy and the purpose of it is:
"it interrupts the spread of seizures by sectioning or disconnecting the nerve fibers (corpus callosum) that connect
one side of the brain to the other. The corpus callosotomy is indicated in some patients with "drop attacks". The goal is
to prevent the spread of seizure discharge to both sides of the brain. It does not stop seizure activity, but may limit the
frequency and severity, especially of seizures that cause falls, thus lessening the risk for serious injury."
Apparently it will stop her grand mals too. I told him my fears and he said he would like us to consult with the
surgeon and if we can't get in soon enough just to bring her into the ER and we will work around the ropes and do it inpatient.
I think I really want a second opinion before taking that plunge.
I got her records sent off last week so I will call Dr. Haas in San Diego to see if he read her records yet or not.
We may try Phenobarbital again if the higher dose doesn't work. I am nervous to try it but do know that it has
helped in the past and not sure how much more worse it can be than all these others. I have a feeling we will be trying
it since she has already started this early morning with 2 grand mals. Mornings seem to be very hard on her and I am
not sure why.
So this is where we are focusing on seizures and nothing but. She barely makes it to therapy if she does and either
seizes or falls asleep because it is after a seizure. Just keep praying we are taken in the right direction with
Oct, 14th 2004:
I have been reluctant to update since things aren't going to well.
Lily is up to 4 to 5 grand mals a day(!). This is pretty much putting her on a seizure/sleep cycle all day long.
This has been going on for 2 weeks straight and it is getting to be very wearing on us.
Her neuro has upped her meds twice in these two weeks and I am taking it upon myself to lower those back since the results
have been absolutly nothing. I am beyond frustrated and not sure where we need to go from here.
I have contacted a Pediatric Neuro who specializes in neurometabolic issues in San Diego working at UCSD. When
Lily's Geneticist said she had a lab result suspecting a metabolic issue but unsure of what I got curious and started asking
around if anyone in AZ specializes in Metabolic issues and found no one. I spoke with a mother of a daughter with Mitochondrial
disease and she recommended Dr. Haas of San Diego and I started the ball rolling. Since we are out of state he
needs to read her records first to see if he is willing to see her and if he feels she indeed has a metabolic issue, then
we will spend sometime in the hospital there in San Diego undergoing a lot of tests we have already had done but looked at
by different eyes and of different specialites. Most likey it will result in another muscle biopsy, spinal
tap and numerous blood draws, MRI and EEG but I feel that we have to explore this venue. I feel if she has a metabolic
issue then we need to find it and treat it if possible. I understand many metabolic issues can be pretty icky but getting a
name is key to me. A name can lead to a treatment and maybe just possibly a cure. I am not asking for Lily
to walk or talk, she just needs some seizure relief and fast or she will start loosing the skills that has taken her 2 yrs
This is an evil monster we are fighting but I will not take it laying down.
Please pray that Dr. Haas will see Lily and before I have this new baby.
Sept. 24th 2004:
Changes, changes and more changes, where to start?
Lily has had many ups and downs this past month. We have some days with out of control seizures and
some not so bad. We are just accepting that they most likely will never stop and deal with them the best way we can.
We are certainly learning to savor those seldom big seizure free days. She always has small ones (myolclonic jerks)
but those are ok for now it is the big nasty generalized ones that get the best of her and me. We had a wonderful day
yesterday and it will go down in the books. She had no big ones and not many small ones, she was a champ in PT and the
PT even got a walker out of her car to try to see if she can stand by holding on to something and she did with our help of
course but it was pretty cool the PT even thought about trying a walker and she said she will bring it again in a few weeks!
She did great with her vision therapist looking at her light box and touching the wheel on it a couple times. My
most favorite part of the day (besides all day getting to stay home with her on Thursdays) was taking her grocery shopping.
Some may say what? Why was that so great? Let me explain that Lily has such low tone there was no way she
could sit in a cart without falling over I have tried it but it has been more than 6 months ago, I knew she was improving
and I had to go so I brought a pillow and had my purse and put her in between the two and she sat up like a big girl,
checked out the whole place and even yelled in delight during our trip! I was just beaming as I walked through the aisles!
She is progressing even though these stupid seizures seem to be plauge her little life. She is our
Check out new pictures of her in my friends wedding last weekend, cutest flower girl I ever have seen!
Aug. 31st 2004:
Well my baby is now two! She had a nice little party and her Grandma and Grandpa Nothdurft came to
visit all the way from South Dakota!
Lily is doing ok. Seizures seem to be acting up but she is in the process of cutting her eye teeth
and a molar, I know she is under stress and her gums are so sensitive anyway from the Dilantin I know she is just under a
lot of stress. Poor baby.
She is really coming along developmentally though! Sitting for well over 10 min at a time, standing
pretty nicely with support and new sounds and a new little attitude that is always fun! She is a doll and we just enjoy
her so much! Can't believe in 6 1/2 months she will be a big sister! Wow!
Thanks for the continued support
Aug. 27th 2004:
Tomorrow LilyAnna Blu will turn 2 yrs old! I cannot believe it. I thought I would have a harder
time with all the "what should have beens" but I am doing pretty good. She is an amazing girl that seems to surprise
us every day. Therapies are going well. I took her off keto for the last time! She was miserable and seizures
were no better so I took her off and thankfully nothing changed but her attitude and she is not constipated anymore.
She will get good cake and none of that nasty keto cheesecake she had to have last year! She still has seizures but
I had to ask myself what was more important? I decided her enjoying life as much as she can is most important
and she is. Lily doesn't play with toys or other kids, one of her few pleasures in life is eating and if the diet wasn't
helping why take that away. Believe me if the diet were to work I most certainly would have kept her on it but it didn't
so I didn't.
Anyway, tomorrow is the big day! Not only will she be a big two yr old she will also be a big sister.
We are expecting at the end of March. A huge surprise that we didn't plan so I have to believe that God planned it.
Thanks for the continued support and prayers.
Aug. 4th 2004:
Just wanted to give a quick update and add some new pictures of Lily. On the May-July page.
Running out of room here so every picture I add, I have to delete one :(
Anyway, Lily is doing ok. Some days are filled with several seizures and some days are filled with
none. She is still on the diet and three meds. We will give it more time. I do know she is doing better
on the diet than off but it isn't the miracle we would "like" to have seen.
Lily finally got out of our bed and got her own bed, right next to ours. You can see it in the new
pictures. She likes it and Andrew and I like having our bed again. Who knows if she will ever sleep in her own
room but for now this is the plan and it is working well.
Not much else to report right now.
July 23rd 2004:
Well we just got home late lastnight from St. Joe's. Lily was taken to the ER on Monday morning and
they admitted her and we just got home as of 10pm Thursday night. What a week. I hate sleeping at the hospital.
Night nurses figure if they are up why should anyone else be sleeping... grr.. I do appreciate the nurses for all they do
but they should be a little bit quieter... maybe?
Anyway, due to all the seizures we are back on the ketogentic diet. I can't say I am too thrilled
to start weighing each little piece of food Lily bug gets but if it helps. She is doing moderatly better. She
is still on three meds and the diet, I will give this a good three month trial. It is rather ironic that a year ago
almost to the day we started keto for the first time. Weird.
Well after a long week of starving, finger pricks, blood drawls, IV's and a MRI all Lily needs is some
R&R here at home and I am happy to do that with her. She is in pretty good spirits today at home and I am so glad.
As far as her seizures are concerned, that will take awhile to see how she does.
Thanks for all your thoughts and prayers while we were there. Continued prayers are always appreciated.
July 18 2004:
Man, seizures suck! This has been a very bad week for my angel. She has had anywhere from 3
- 6 tonic clonics (grand mals) a day! Those are the yucky violent ones no one wants to see once and I get to witness
all day long. I am not sure what is wrong. She hasn't been doing well since we came back from our trip so I am
not sure the deal.
It is 6am on a Sunday and my day has already been filled with two TC's (tonic clonics) and Diastat (emergency
valum). If it keeps going on like this we will be spending the rest of the day in the ER. She is just doing so
poorly and I am at a loss. She is teething but has been on and off almost this whole year. There were monsoons
this week, barometric pressure maybe? All I know is I called her neuro and the on-call neuro apparently, as reported
by the nurse, just shook his head and said there is nothing he can do after seeing all the meds she is on. I think it
is time to start looking at some alternatives. I have seen some interesting things lately and may look more into them.
I will discuss futher if I actually do anything.
I did send Lily's records (and this was no easy task, it was as thick as a novel) to John Hopkin's to request
they use her in a study. I just pray they get in the right hands and someone really reads through them and can offer
an idea or maybe even let her be involved in a research that would get us to Baltimore on their dime and be seen by the top
of the top.
Well if you could please keep Lily in your prayers, she really needs to be relieved some of these seizures,
I'd take just one a day if we could.
Much love, the Nothdurft's.
July 2, 2004:
Just wanted to give a short quick update. We are going to visit family in Rapid City, SD for the 4th,
we are excited and suposed to be getting ready right now!
I just wanted to mention that Lily's new interventionist (since Ms. Ginny is on bedrest) came over yesterday
and held this 4th of july mess of stuff in front of Lily (while she was laying down) and ever so slowly Lily reached up with
both hands and grabbed it! Lily does nothing with her hands so this was in my eyes, HUGE!
She is also so very vocal now, just saying every sound in the book. I credit Music Therapy for those
She is unfortunately having more drops and myoclonics (short brief sz's) so we are increasing her Topamax
today and pray it doesn't slow her down. She is just so awesome lately!
June 16th 2004:
Good News! Mitochondrial test (muscle biopsy) came back and it was negative! Woo Hoo!
That is wonderful! The other tests all came back looking just fine too so although we are still left with no answers
at least I am at ease a bit with the whole mito thing.
Genetics doc is sending me a rx for another blood draw for some more testing so I will let everyone know
what happens with that!
The other Rett test came back negative also. We are taking Lily to a developmental specialist in Aug
and I will ask the doc what he thinks about Lily and Rett's. It is starting to look like a dead end with Rett and Mito
but there can be worse things for sure.
Anyway, Lily is doing pretty well. We are going to San Diego tomorrow and looking forward to it!
Thanks for your continued prayers and support!
June 9th 2004:
June 9th already!! Wow, time flies. We are in our new home and sooooooo happy to be out of the
ghetto! Woo hoo, we are moving on up to the East Side!
Lily didn't like the pool so much when it was nice and cool but now it is like lukewarm bath water she is
loving it. She was all smiles on Sunday when I took her in. Her favorite part is afterwards I lay her naked in
the shade and she is so happy. Nothing wrong with a good positive body image right?
She was turned up for the last time last Tues and we don't have to see Dr. NG until Aug now! I get
a break, just in time it is so dang hot! I have seen a huge difference in her big seizures but she still continues to
have a lot of small ones through out the day. If she continues we will have to discuss some new treatments come Aug.
I am ok for the time being with the small ones. But when she starts getting more mobile (when, not if) she can't have
those or else she'll fall all the time.
On a very happy note Lily is acting much more verbal lately and although I am skeptical, I sware she copied
me when I said "oh no" the other day. Clear as a bell, "oh no". I am going to take it.
She is also all about giggling lately. Everything is funny and it is so cute! She likes to yell
at her mom a lot, not sure what I did.
She seems to be growing up very fast and I cannot believe her 2nd bday is right around the corner!
Her looks are changing and she is just getting so pretty. I am not the only one saying this so I am not being biased!
She is just growing into a little girl and she really is just so pretty.
Anyway she is doing as well as she can right now and I hope this isn't the calm before the storm.
Like how all this made me so skeptical about everything!
May 21 2004:
Lily had her biopsy done on the 19th and that went well and thanks for all the prayers, I really was hessitant
to put her back under and have her cut open again. Kinda tired of experiementing on my little one but I have to know
that is was the right thing to do. I have heard that with the frozen biopsy there can be false negatives when diagnosing
for Mitocondrial Disease but I am going to leave this in God's hands otherwise I will just worry too much. She doesn't
have a lot of the characteristics so I think a negative will be a negative. Obviously a positive is a positive.
This answer pretty much hold the key to our future....scary thought. Mito is genetic and that would make it scary
to have more kids but I just know in my gut that we are suposed to have more kids but I really don't want anymore special
needs kids (...this is what goes on in my head constantly!) Anyway, we are still waiting for the Rett test to come back
and now the mito.... let the sitting on pins and needles begin!
Extra prayers wouldn't hurt right now. At least we have moving to keep our mind off of things.
Lily has only one more apt to go before she is all the way "up" with her VNS and we are on a roller coaster
where seizures are concerned. I thought that she wasn't having anymore last week and now we are back up to several violent
grand mals a day. Oh I wish this roller coaster would just maybe straighten itself out and just let us cruise for a
Ok, I will update when I can things may be crazy for a bit.
May 6th 2004:
Well not much has changed in Lily's life. We turned her VNS up in voltage again so she is now at a
2.0 and in one month she will be 3.0 and that is maxed out. We will wait and see how she does before we decide anything
new. She is still having daily seizures so we are getting more and more impatient as time goes by. She does seem
to have less violent seizures but no seizures is better.
We are moving if all goes well (fingers crossed) Memorial weekend! We found a great place with 3 beds,
2 baths and a den and on top of it all a fenced in swimming pool! We are so excited and hope this all works out.
Lily is really getting around by rolling, I mean this kid can roll. She is so funny, she looks like
she is really trying to crawl but can't figure it out she she just wiggles her arms and legs real hard like if she wiggles
hard enough she'll take off....our silly monkey.
No test result back yet and muscle biopsy is scheduled for May 19th at 12:30pm.
I will continue to update. Thanks.
April 22nd 2004: We are looking into something new now and
it is taking all my time! Lily was tested a year ago for Rett's Syndrome. Her Neuro really believed she had it
but the test came back negative. But the test can only actually dx about 80% of the girls with it (girls only disease).
I guess there is so much about Rett's no one knows yet that it isn't a simple test. Her neuro kept saying she still
could have a rarer form with early onset (most typical rett's girls develop normally until 6-18mo then regress) and that the
test wasn't a solid answer and she looks so much like those patients. I kept shrugging him off b/c if you read about Rett's
you want the negative diagnosis BUT last week at our parents meeting a mom came to speak to us about having a child with disabilities
and she mentioned her daughter having Rett's, I said our neuro thinks Lily has it, we talked but not much. Then just
this past Monday she showed up again and she met Lily and played with her the whole time and told me she really believed Lily
has Rett's. She just said there are characteristics just like her daughter has and there is no denying it. So,
me being me, I decided to divulge myself into some Rett's research and came across the woman who started up the Rett's Research,
and emailed her. She emailed me back that she went to Lily's webpage and asked me to call her and I did and she
told me there is another test that is brand new and that she will email me the info and after her being drawn the results
can be back in less than two weeks. She said if that still comes back neg she could still have
it and she'd like to send some of Lily's blood to a research to India! Talking to her on the phone she thinks Lily
has some of the major characteristics but not all. She seems interested in us and at least she may be able to help
us get a yes or no. She said there is a ton of exciting research going on and they are finding out all kinds of things
and maybe someday there can be a cure and if we can help other parents down the road not even have to deal with
all this than I am all for helping! Anyway, I am hoping I found this lady not by accident and maybe just maybe there is
a diagnosis out there for Lily and although it certainly isn't something I want her to have, I really would rather have something
concrete. Lily is still having a muscle biposy coming up in a few weeks to test for Mitocondrial Disease. We met
the surgeon and like him a lot. They will do the surgery at Phoenix Children's (yay) and send pieces of her muscle to
San Diego and keep some here for studies. I am hoping we will find an answer, I had given up hope on finding anything but
maybe, just maybe we'll know what monster we are fighting and focus all our energy into that instead of being all over the
place. Lily is continuing to still have seizures and she has been "turned up" yet again just last Tues. We are impatiently
waiting to see if this VNS thing has been worth it all.
Thanks for your continued support.
April 7th 2004: Well Lily was "turned up" yesterday and still no
difference as of yet. She is still having an average of 3 grand mal seizures a day and it seems to take a lot out of
her. We are doing some changes with her meds and hoping for some relief sometime soon. It is hard to see her have
so many seizures and it is making me angry. We are discussing trying the keto diet again since we had better control
with that than all the drugs. Her Infantile Spasms have resolved and it may be a good time to try it
again. We can't do just yet since she can't have too many changes at once or we won't know what is doing what,
so we'll have to hang tight for awhile and like usual "wait and see". Lily still loves Music Therapy and seems to be
getting a lot out of it. She is drinking through a straw like a big girl and rolling all over again. She will
start PT back up next week.
Lily will be having another minor surgery soon. We are having
her tested for Mitocondrial Disease and unfortunatly that requires a muscle biopsy so she will be put under (again) and they
will take a piece out of her thigh, fly it to San Diego and we will find out the results I assume a month or two afterwards.
I, of course will keep updated. Thanks.
March 24th 2004: My how time flies! Surgery to implant the
VNS was March 10th and all went well. Lily seemed to be in more pain than I had anticipated and that was hard on us
to see her so upset. But in usual Lily fashion she was back to her old self in no time. Yesterday, March 23rd,
we turned on her VNS and will return every two weeks for a few months to get her vamped up! She is our little robot!
:) So far we have noticed no change but we were told about a hundred times not to expect too much until she is at a
theraputic level. So when she had two seizures today I won't lie and say I wasn't disappointed but I may be expecting
too much too soon. We carry a magnet that we swipe across her VNS in her chest and it sends extra boosts of whatever
it is to her brain before she has a seizure but the hard part is, it is really hard to tell when she is about to have a seizure.
We swipe it during but it is too late, her seizures are so short anyway that it really doesn't help. I am
going to try to "study" her more to see if there is anything in particular she does prior to a seizure to see if we can't
help them from coming. I think this will be a learning process for us all who spend time with Lily. Knowing when
to swipe. Lily isn't doing much developmentally. She decided that she is no longer going to eat and apparently
that is a side effect to her Topamax. Unfortunatly Topamax happens to be a drug that is helping so we just have to watch
her and see. Right now she is living on Pedisure. So strange to go from eating us out of house and home to
fighting her just to give her meds! We will start Physical Therapy next week, she is enjoying the break.
OT & ST have been continuing while she is in "recovery". She also started Music Therapy Monday and will continue
every Monday now. It is strange for me because I have to sit in the waiting room while she is receiving
music therapy, I guess they don't like the parents to be in the room with the kids. MT said she did great
and vocalized on cue 2x so that is good! Thanks for continued thoghts and prayers. I will update again at
March 3, 2004: First we have to wish Cousin Ayden Happy 1st
Birthday~! We love you!!
2nd: VNS surgery is scheduled for March 10th 2004, one
week from today! I can't believe how quick it is going to happen! Apparently new neuro Dr. NG yelled at the neurosurgeons
receptionist for not getting her scheduled quick enough! Neurosurgeon said that Dr. NG is Lily's biggest activist,
I disagree I think I am but it is nice to have him on her side.
3rd: Changes, changes, changes......Lily is going through
so many changes right now! She was on Gabitril, Felbatrol and Topamax as of last week THEN she had a very bad two days,
pretty much the worst we have ever seen her so the neuro took her off the Gabitril (last day today) and put her on Dilantin.
So she is on three heavy drugs right now and although she is having better control she still isn't seizure free and she is
a bit dopy. I feel bad for her. She had an eye appointment yesterday and the Dr. is noticing lots of improvement
with her CVI but noticed when she looks at something she uses one eye and not both so we are starting to patch her every night
for an hour and a half each night alternating eyes. He said if she does well with it she will probably be looking into
glasses in two months. Last night she could have cared less that she had a patch on her eye. She is such a trooper!
We just love her so much. Her PT brought a stander in today and it was so cute seeing her standing up! She is
so tall. She did very well in it so we are starting the process of getting one of our own. PT still strongly believes
she'll be sitting unassisted completely and most likely standing and possibly even walking one day....I am skeptable but at
least Miss Elaine is a believer. Lily also got approved for Music Therapy! I am so excited! She starts March
22 and I am hopeful they can really help! I will update after her surgery. Please keep the prayers coming, Lily
will really need them and so will her parents!
Feb. 13th 2004: Well after a very short stay at BIN EMU (Barrow's Neurological Institute Epilepsy Monitoring Unit) a bit more than
24 hours the Neuro's got all the data they needed. Lily had 13 episodes in 24 hours and was one of the quickest patients
to be in and out. I guess Lily isn't a stranger to breaking records. The Neurological team got together and had
a meeting and Lily was the primary case brought up and all these brillant minds came up with this.....she is a mystery.
I could have saved everyone a lot of money with that. They do feel she is headed for a dx of LGS (Lennox-Gastaut Syndrome).
I was the one to ask if that was where she was headed and the Neuro said she is not dx with LGS as yet to speak but it looks
like she is headed in that direction. LGS is basically hard to control seizures, it isn't like we weren't already dealing
with that. Mental retardation is a common outcome of LGS but it is for IS also. I am not so niave to think she
will come out of this walking and talking and heading to Harvard but it is hard to hear your biggest fears are to come to
truth. We have an apt. with the current neuro we have been seeing on Tuesday to discuss our "options". I think
all we have left to try is the VNS (vagus nerve stimulator) it is like a pacemaker placed on your vagus nerve that some how
can control seizures. It is a surgery and we have to meet with the Pediatric Neurosurgeon for that. Medication
wise she has one week left on Phenobarbital and it has been rough to say the least but I just have to keep telling myself,
one more week! She started Topamax again and is still on Gabitril and Felbatrol. She is no longer on Klonopin.
I will give another update after we speak with the neuro and surgeon and know what path we are soon to take. Thanks
for the continued prayers and please continue! :) Oh have a nice Valentines day!
Feb. 4th 2004:
I haven't updated much lately, things have been very busy. Jan. 11th I, Kim, ran, well jogged the
1/2 marathon. My internet friend now a "real" friend, Wendy, came to visit with her husband and daughter and we ran
it together along with my longtime friend Allison. Around mile 10 or so and I was really loosing steam Wendy told me to think
of how tough our girls are and you have to be strong for them and it carried me through to the end, although I was about
to die afterwards it was certainly worth it. I met Wendy online almost a year ago b/c our girls are so much alike and
we became fast friends and she visited us then Lily and I went last weekend visited them in Nashville, TN! I went
to attend a Alliance Woman Conference and during my breaks we played with Wendy, Langan and Jon! The Conference was
great too, the keynote speaker was a blind woman and she was just so inspirational! At the end of the conference I spoke
with her and she held Lily and told me how special she is and how God must really trust me to have such a special child, that
melted my heart, how true is that?
Lily is going to be monitored Tues, Feb. 10th and I am really hoping we get some answers there. Keep
us in continued prayers. Lily's seizures are really uncontrolled right now with a big med change so we are hoping
they will get lots of information on her little brain and maybe offer us some solutions. Good news is Lily will be off
Phenobarbital completely in two more weeks! I am hoping to see some new developments, she is already learning so much
right now on 1/4 of what she used to be on! I will update when we return some time during the week of the 16th.
Jan. 8th 2004:
Happy New Year!
Well I think with the new year I have a new outlook. Not sure how it came but
I have a strange sense of calming when it comes to Lily. It isn't like I don't care but I don't want to worry so much.
Lily is an awesome kid who is learning new things everyday! The Klonopin is helping some, although it is a drug that
looses its effectiveness rather quickly so I am not expecting a miracle from this. Actually I am not expecting a miracle
ever. No, I am not pessimistic and I am not loosing hope, actually I think I found it somewhere. Maybe it was
when I was feeling sorry for myself when Christmas with a 16 month old wasn't what it was supposed to be, maybe it
was when I looked at Lily one morning and she looked back at me and smiled, maybe I just finally felt comfortable with the
life ahead of us. Who knows when or how it happened, I am just glad it did. Lily is Lily. Lily just happens
to have special needs. Maybe she will walk one day, maybe not. Maybe she will have some mental handicaps, maybe
not. But it could be worse. Who knows what our future will be, could have been, would have been, there
are so many more unanswered questions in this world than answered and that is the way it should be. We are blessed to
be Lily's parents. Lily is an incredible little girl and anyone who comes in contact with her is lucky to be in
her presence! She is truly an angel and I am proud that I delivered heaven on earth!
Sorry for the ramblings, not much of a Lily update but a Kim update. I am asked
constantly how I am and I always say if Lily is good, I am good. But I can honestly say, I am good.
Lily is good. Dad is good. Life is good.
December 29th 2003:
Well let's see.... Dec. 17th was Lily's last ACTH shot. I
am glad we aren't doing those anymore but she is having a lot of seizures. I am unsure if she is even having spasms
anymore or not but she is having some new sort of seizures and she has them very often.
She had to go back on the Pheno during the weaning of ACTH since
she was doing so poorly we had to do one at a time. Her Gabitril has been upped and we started Klonopin, with all this
nothing has helped. We haven't seen this little control since all this started so I feel like we took 1 step forward
and 3 back. So frustrating!
We are taking Lily to Barrow's Neurological Institute's Epilepsy
Monitoring Center Feb. 10th 2004 and we'll see if these genius's can offer some help. Who knows. I'll be interested
in what these guys have to say. Dr. B. has done so much for her with tests and all so I am doubtful they will see something
new but I guess a new set of eyes can't hurt.
Sometimes I wonder when is enough enough? Do we keep searching
for answers or do we just accept her condition for what it is? The last thing I want is for Lily to be some sort of
guinea pig but I also can't sit back and watch her live like this. I guess we'll see what this next step leads us.
Good news: Lily has learned to barrel roll all over the place!
She has learned to be mobile! It is so fun to watch her. She was all over the place Christmas morning and loved
her mylar wrapping paper!
Dec. 8th 2003:
We are weening again, quicker this time, she should be off the ACTH really soon. We are also
trying again to take her off the Phenobarb, cross your fingers this is the last time we try to take her off. If she
has a hard time she'll be on it for a long time. I don't want her on that for a long time. We are upping the Gabitril
and may add something new next week if need be. I am not too confident with her still having little spams, poor baby.
She's has been through so much and she is only 15 months old!
Kyrah's funeral is tomorrow. I'm praying that I can be strong for Brenda.
Dec. 3rd, 2003:
I am a bit frustrated right now with everything. After almost having Lily completely weened
and very happy I'd like to add, her spasms came back worse than they were before we started. After our plane ride to
South Dakota for Thanksgiving Lily had a terrible amount of spams and seizures. Dr. B had the holiday weekend off (how
dare he) and with out having anyone help me medically I decided to up her dose every other day of the ACTH. I am not
sure if it were the right thing to do but no one wanted to see her seize like that. The ACTH at a higher dose seemed
to help with the frequency and severity but they still were there all weekend and she had another bad day on our flight back.
Flying and Lily don't mix!
Dr. B put Lil on 40 units every day (she was on 20 every OTHER day) so now only after 3 days of the
high dose she is back to crying and it wasn't crabby like before it is more like a pain cry and although the spasms are less
they are still here and she cries so hard when she has them, we think they scare her.
There is one other medication Lily can try for the IS and that is called Vigibritan (sp?) it isn't
legal in the US and can only be bought in Canada and Mexico but I know Dr. B can get it for her. It's not as harsh but
kids stay on it for 2 yrs and it can affect periferal vision and as you know Lily is already dealing with severe vision impairments
so it is like what do you do?
I will speak with Dr. B on Friday to see what our long term goal is. I am so tired of making
Good news, Lily got a new OT that is from the Foundation for Blind Children and I can't wait til we
start working with her and we got a Speech Therapist to come weekly too and she is great. We of course still have Ginny
and Elaine (PT). I think we really have a great team that is in it for Lily and I know she will benefit greatly.
We did have a loss yesterday. Kyrah was a little girl that went to our playgroup at The Foundation
for Blind Children, she was 2 1/2 yrs old and had beautiful long dark hair. Kyrah passed away yesterday and it
was quite a blow. I ask for prayers for her family. Her mom is the sweetest thing named Brenda and I am sure
she could use all your prayers. Kyrah will be greatly missed by her family and her family at the FBC.
Nov. 18th 2003:
Well let's see everyday is a different day. Lily was doing pretty well with the seizure control
after we upped her new drug Gabitril but her spasms seem to be coming back worse with every ween. Developmentally she
is doing awesome, sitting up, rolling over effortlessly, just so alert and so much fun but I am sure once the ACTH is gone
she'll be back to her constant spasms. What to do, what to do. After a several day absence of the big seizures
she had 3 last night and one this morning on top of the spasms. I am waiting to hear what her neuro wants to do, I know
he doesn't want to continue the ACTH, she is gaining too much and complications can happen the longer she is on so we will
I love her development so I shouldn't complain but man, I really wish for some seizue control, too
much to ask? All we can do is continue to keep on praying.