Friday, April 18, 2008

Spring Break

The kids have been on vacation all week, and we've all made it through alive, although we do have three days left! The weather has been phenomenal and we've been on lots of bike rides, and clocking in tons of baseball practice. Christian started his coach pitch T-ball & Madison starts softball soon, so we're looking forward to getting back in the swing of things.

Ava has had a roller coaster of good days and bad days over the past two weeks. It's so hard to correlate her bad days with any one thing, as she has been on a sneak-a-thon with food. She's been caught eating crumbs off the rug, and pretty much anything that looks like food. Needless to say, Matt feels it's the best thing that's happened so far as I'm vacuuming like crazy and the counters are always clean. The first thing she does when we go to anyone's house is comb the rug and corners from crumbs.

We decided to change the ratio of her diet from 3:1 to 3.5:1, in hopes we can see a bit more consistency, and better control. We're going to give this a few weeks and see where we're at. We are still completely off all seizure medication, and the goal is to stay that way. She is still doing so well with her speech and she is getting so much stronger. I really think that 2 week bout with the flu/pneumonia, then all the other illnesses that followed really knocked out her physical strength, as she's made so much progress over the past few weeks. She's back to running away, climbing up the swing set, and all her other fav. activities.

So we're still plugging along with the diet and praying we can stay away from meds.

We're looking forward to a seizure free summer!

Say it again.....................

SEIZURE FREE SUMMER!!!!!!!!!!!!!!!!!!!!!!

1 comment:

baby trevor's mommy said...

The mental pic of Ava scrounging for crumbs it too much! LOL!

But seriously...I'm hoping you have a SF summer too! And I'm thrilled that she's back to her *old* self! :O)

Toby's getting ready to start b-ball too! He's def an athlete! How old is Christian btw? Sounds like he & Tobes may be close in age?

Oh...and I guess your *gut sharing* has rubbed off on me, eh?


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.