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All About LilyAnna Blu

Lily's Story


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LilyAnna Blu 0-2 years
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Lily's 5 now!
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Inspirations

Updated rewritten story of LilyAnna Blu 10/20/05  **updated 11/27/2007

 

We chose the name LilyAnna Blu when I was 6 months pregnant.  We imagined her to be beautiful, unique and one day famous.  She turned out to be all of those things just not in the way we had expected.

 

After a perfect pregnancy, except for mean heartburn I was induced at 40w2d pregnant.  Ultrasound showed that Lily would be over 9 lbs so Dr. felt an induction was necessary.  I went in at 7am on Tuesday August 27th 2002 and at 11:52am Wednesday August 28th 2002 out came LilyAnna Blu weighing 8lbs 15oz and suffered a broken collarbone but otherwise perfect.  Lily did endure some major facial bruising, so major they had a note in her bassinet that said my face is bruised, I guess so they didn’t think she stopped breathing.  We had some difficulties nursing but I was determined to do it and 48 hours later we were home.

 

The first few weeks of Lily’s life were a blur, as most parents of newborns know.  She was up often through the night.  She cried when I nursed her, after nursing my 2nd child I know now I have hyper lactation and she was frustrated with the excess amounts of milk.  There was nothing wrong with her it was I.  Daddy would dance with her to Van Morrison in the living room when she was fussy and although we were tired we were in love. 

 

Lily started doing these “cute” little movements that I even captured on film.  She would look to the right and tighten her lips and we laughed.  After 2.5 weeks of frustration with nursing I started introducing the occasional bottle of formula and she just drank it up.  A lot easier and I could see nursing wouldn’t be lasting much longer.  On Friday September 20th 2002 when Lily was a mere 3weeks 2 days old I saw a horrifying site, she was convulsing in her bassinet.  I quickly grabbed her and held her and I kept it to myself.  I thought it was surely a freak thing and I would never see it again, but then she did it again.  Still not thinking it was a God forbid seizure I tell my husband Andrew and he says we better call her pediatrician.  Hindsight I can’t believe we didn’t just rush her to the ER but we called her Pediatrician and they said “bring her in right away”.  During the examination she looked good.  I couldn’t remember verbatim what happened so he kind of blew it off.  I mean she was a healthy baby born to two young healthy adults.  He did advice since it was Friday that I take her to the ER if she has any more episodes.  Well sure enough Saturday was filled with them.  I actually waited for Andrew to come home that morning before we took her.  I just don’t know if I was scared of what would happen at the hospital or that I just had no comprehension of what was going on in her little brain.  I guess “seizure in a 3 week old” is the golden ticket to no waiting in the waiting room.  We were taken back right away and she performed for the ER doctor, nurse and anyone else that happened to be in our room at the time.  They wanted to do a Cat Scan and seeing her so small on the table sucking her pacifier made me want to puke.  They then said they would give her an IV, which was the first of many experiences to where I wanted to curl up with my child and bawl until I couldn’t breathe.  I wasn’t allowed to do that so I held my breath and did my best to calm her down while several different nurses tried getting an IV in my 3-week-old baby.  I had to look away because seeing this was killing me.  I wanted to cry but I wanted to be strong so I kept looking at the television set.  After they got the IV in, finally, they pumped her full with Phenobarbital and took her blood and then came to me and said, “We want to admit her”.  I said, “You mean sleep here?”  ER Doc looked at me funny and said, “Yes.”  I have only slept in a hospital when I was born and when I gave birth.  Hospitals are for sick people.  My daughter was fine they stopped her seizures.  That is what Doctors do they fix things.  They said they want her to see the Neurologist and run more tests.  So we went to our hospital room.  She had a crib and Andrew and I slept in a pull out chair.  We were just there 3 weeks ago with a healthy baby and now we are here with a sick one?  So after Neuro consult, spinal tap, another one of those moments, EEG and MRI they said she was fine, nothing wrong with her.  I specifically remember asking if she will grow up to be a healthy little girl and the on call Pediatrician and Neurologist agreed she would.

 

That was the first of many hospitalizations.  I learned not all Doctors could fix things.  We could not find a reason for Lily’s seizures nor could we find a way to stop them.  Worse yet she was not developing. 

 

At 5 months old I was told that Lily “could not see very good”.  I felt like I was sucker punched and barely made it to my car before I lost it completely.  Not only was she seizing but also she was blind?  After our 3rd Ophthalmologist Lily was diagnosed with Cortical Visual Impairment, which means her eyes are just fine, but the connection from her eyes to her brain are not working.  Lily still has very low vision and attends an amazing school called The Foundation for Blind Children, more on them later.

 

At 11 months Lily was then diagnosed with Infantile Spasms and we had to inject her daily for 8 weeks with a strong steroid called ACTH.  She blew up like a balloon, was miserable and although her seizures stopped on a full dose, they all returned when she was off the treatment.  Giving Lily daily injections had to be one of the cruelest and worst parts of both our lives.

 

By 16 months and after coming off ACTH Lily learned to roll both ways and used that as her way of getting around.  We couldn’t have been more proud.  I like to think it was my birthday gift from her.

At 18 months Lily was the youngest patient in AZ to get a VNS (vagal nerve stimulator), which is supposed to help with seizures, it unfortunately did not help.  I captured Lily on video laughing like never before and we have yet to see such a giggle like that.  I am thankful everyday for that video. 

At two Lily was starting to sit on her own but then her seizures went into overdrive.  She started regressing and we were desperate.  Lily was having anywhere from 3-6 tonic clonic seizures aka grand mals.  Lily was on her 3rd neurologist by then and he recommended her having a corpus callosotomy, basically splitting her corpus callosom (separating her right side of her brain from her left to try to stop the seizures from generalizing, taking over whole brain).  After many sleepless nights and a lot of tears of sadness and frustration we decided on the surgery.  On January 31, 2005 Lily went in for surgery, the worst day of my life.  I was 8 months pregnant with our surprise baby and sick with worry.  Praying for a miracle.  When they finally called me from the OR they said she came out of surgery with a temp of 104 and was seizing I felt like throwing in the towel, giving up.  What more could we do?  How could this God I have lived my whole life praying to actually exist?  When I finally got to see her after the longest day of my life I just wanted to hold her but I couldn’t.  She was miserable, I was miserable.  I was depressed, angry and hurt.  She had more seizures that night and I cried myself to sleep.  (You can read all the details of her surgery on my updated journal)

 

Since the surgery was unsuccessful we were just dealing with the seizures and just trying to accept them.  March 17, 2005 I delivered Andi Jane via c-section, afraid birth injury could have possibly caused Lily’s problems and not willing to risk it, Andi is healthy and perfect.  I was not breathing until she passed her 3 week 2 day but she did and has.  But having a newborn and a seizing 2 year old was more than most can take.  When Andi was 2 weeks old Lily had an appointment with her neurologist.  My mom took her for me and he prescribed Vigabitrine/Sabril.  It is not FDA approved in America and I could get it from Mexico or Canada.  My friend’s daughter was on it and since she was off it they sent me hers and told me what pharmacy in Canada to use.  Would you believe the very next day after trying it her grand mal seizures stopped?  Just vanished.  We had to do some experimenting with her other meds and eventually found the right combo.  She is now on Vigabitrine 500mg 3x a day, Felbatol 300mg am, 200mg lunch and pm and Topamax 75mg 3x a day or TID for you medical experts.  The Topamax caused her to go into metabolic acidosis but with 1300mg of sodium bicarb 3x a day that is taken care of.  She still has myoclonic seizures where she just jerks but they are minor and she only has like 5 a day.  Coming from 3-6 up to 10 min long grand mals that is pretty much a miracle.

 

Lily is currently three years old and attends The Foundation for Blind Children for Pre School.  She rides in her wheelchair on the school bus and brings home happy notes every day.  She loves it there and in only two months she is sitting better on her own and helping to hold her own cup.  Her teacher is wonderful and I already dread the day she has to move on to kindergarten.  We think Ms. Jean is our Godsend and life has really turned around for all of us.  The first 2.5 years of Lily’s life was sad, dark and scary but we have entered into the light.  We get to enjoy Lily for who she is and the quality of her life has changed enormously.  We get to experience what parenting a “typical” child is all about and don’t take any milestone for granted, I feel like the luckiest mom on the planet.  I get the best of both worlds with my two girls and am thankful for everyday I have with them!

 

**11/27/07**

Lily is currently 5 years old, attending public school, all day kindergarten. She is making very slow progress, but progress she is making. She is learning to take steps and doing better every PT session. She will be getting Hippotherapy (horse)soon, giving her two hours of PT a week plus what she gets at school. She is no longer on the bi-carb nor Felbatol. We are in the slow process of a wean of Vigabitrine and hopefully she will be in a study to stop her Atonic (drop) seizures that she has all through the day. She is still pretty darn free of big seizures, hence the very slow wean, I told Neuro once I see one big one Game Over, wean stopping! I am updating on the wean in the updated journal.

I just wanted to update here since it has been two years.**

 

 

**I didn’t share much of the medical side of these past three years but for those of you who have been there or are there and are interested in tests and meds, here is the rap sheet**

Meds taken (not in any order):

Phenobarbital, Zonegran, Dilantin, Carbitol, Neurontin, Klonopin, Keppra, Topamax, ACTH, Depakote, Lamictal, Triliptal, Vigabitrine, Felbatol. I am sure I am missing some.

Natural remedies:

Ketogenic diet 2x, Vitamin B6, Folinic Acid and minerals from Australia.

Testing:

More than I could count EEG’s, 4 video EEG’s, 5 MRI’s, 1 PetScan, 3 spinal taps, 2 muscle biopsies, 2 skin biopsies and more blood and urine samples than I could possibly count, all with pretty much no answers.

Surgeries:

VNS implanted March 04, muscle/skin biopsy April 04, 2nd muscle/skin biopsy Jan. 05, Corpus Callosotomy Jan. 31, 2005.

Doctors:

Three Neurologists in AZ, one in San Diego, CA.  3 ophthalmologists in AZ, 1 kidney doctor, 2 Pediatricians, 1 neurosurgeon

Therapies:

PT, OT, Speech and Music, soon Hippo

Hospitalizations:

8, I think.