Friday, January 25, 2008

"I think we're cured"

Is exactly what I said to Ava's neurologist jokingly yesterday, as things have been going so well seizure wise since we started the diet. No sooner the words came out of my mouth, Ava had her first fall on in over a week. My heart sank. Even after all we've been through, knowing full well that there was a very good possibility this could and would happen.....my heart was broken for my daughter as I watched her cry harder than she's cried during a fall in a long time (it happened at her playgroup), and she didn't even get hurt!

I knew that I had to make a choice. How was this going to affect me. I"m not usually a corny person, but I've always loved the part in the movie Shawshank Redemption when one of the characters makes a life changing decision and says "Either get busy living, or get busy dying", and I often relate that to our situation. We can't spend ever day waiting for Ava to be "cured" or for everything to be perfect, or even semi-normal. Shit happens. Especially when things are going well. I think we're all ready to start being happy no matter what life throws at us. We're tired of waiting....and so is Ava. We want her to look at our faces and see peace, faith, and an undying tenacity to make her life better, not sadness, defeat, and disappointment.

She had her follow up appointment with the dietitian today and she lost a pound and a half. We increased her calories, and limited her fluid intake. So we'll see how next week goes.

We have so much to be thankful for.

"Faith is the substance of things hoped for, the evidence of things not seen." - Hebrews 11:1

1 comment:

baby trevor's mommy said...

I read a verse in Proverbs the other day that totally spoke to me...
Disaster strikes like a cyclone, whirling the wicked away, but the godly have a lasting foundation.
Proverbs 10:25
...it feels like our life is in this cyclone blender & just when we catch our breath things start swirling again!
I'm with you, Rebecca...trying to focus more on the happy...less on the sad!
...danielle

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.


So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.