Friday, November 6, 2009

The Longest Update Ever

It's been a long time....what can I say. It seems the magnitude of Ava's condition has finally caught up with me.

Thirty pounds later, and a few more wrinkles, I think I'm finally turning the corner, and ready to blog again. Maybe it all started when I got to thinking....and actually letting the thought stick around for awhile....that MAYBE...she will never be rid of this.

That she is now a solid year behind her peers cognitively, and we seem to be widening the gap instead of closing it.

I actually had to look at that. And worst of all........

feel that.

All I just keep thinking is.... how could she have been born so perfect. Five fingers, five toes....quick labor....easy pregnancy. I want to press the rewind button to the first few weeks when nothing was wrong. To go back to the very first EEG we had at 6 months old when they said "it was normal" and hold on to that....... and press the pause button.

Now....she is CLEARLY different. Not only do we all see it. We feel it. A lot more now than ever before.

It's a hard pill to swallow.

So here's the (entire year) update in a nutshell. Since my last post, January of this year, so much has happened.

Firstly, we weaned off the Ketogenic diet this past April after about a year and a half on the diet. It wasn't even really a planned wean. When the though actually crossed my mind...and I let it say for awhile.


We'll NEVER be seizure free.


I hate even spelling that. Thinking that.....Feeling that.

It's that one thought, that sent me into survival mode. Barely getting by. Waiting for the sun to go down and the day to be over so I could dream.

Because a dream is all I had that made me have that feeling again. That one moment in time when you actually exhale.

And say to youself.............

In this very moment.............I'm happy.......things are good.................


I only exhale in my dreams.

So back to the Keto wean....the weird part, was that even though she was in 2+ Ketosis, her seizure activity was o.k. Not off the wall, like I would have thought. Like I imagined it would be off the diet. Our miracle that stopped the 60+ drop seizures she was having at only 2 years old. That cut down her life threatning seizures to only 1 a year instead of 1 every 3 weeks.

I think we even lost our "frequent flyer" pass in the Hasbro ER.

The wean didn't exactly go as planned. Ava pretty much had weaned herself off the diet by these daily sneaks I couldn't figure out. Anyway......Dr. Neuro was less than pleased, and had wanted to plan this out. A very careful, slow wean, as to not "rock the boat" so to speak. But in typical Ava fashion it was an abrubt, high drama, tons of withdrawals, then..well. Status Quo.

After a few med adjustments and the seizures were still present....but not absolutely out of control..and for the past few months I've been ok with that.

I want her to eat.

Pop Tarts (her favorite), chips, bread, orange juice....all of the things we take for granted every day were things that were forbidded to her...and she was still having seizures...every day.

I had enough. We all had enough. So if we had to watch her have seizures all mine as well be with a pop tart in her hand!!!

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.