Tuesday, April 29, 2008

Let the Games Begin!

Baseball season is here, and this week is "Game Week". Christian has his first game tomorrow, and we're back in activities mode. Quite honestly, last year, Ava was so sick that the two older kids really didn't get to do as many sports and activities as we usually do. In fact, truth be told, I really wasn't up to facing anyone. All the questions, the "you poor thing" faces....I just couldn't do it. Anyone who knows me well knows that there is one thing I absolutely cannot do.

A poker face.

As much as I've been hemming and hawing about the diet, things are better. Not perfect....but better.

I'm much more comfortable with accepting Ava for who she is, and not trying to pretend things aren't exactly what they are. She is constantly examined by every mother, father, and town resident who knows she's had a seizure disorder. In all truthfulness, I think I'm really starting to be O.K. with it (except for the occasional ignorant comment). It's easy to forget what life was like without a special needs child, and instead of getting royally pissed off by the looking, the questions, and the totally weird comments sometimes, I've really been trying to picture "the old me" in the other persons shoes.

So now that Mom's not a ticking time bomb anymore*LOL* we're all really excited to start the summer. Madison's been working hard on a school play. She's working the tech crew, and absolutely loves it. Madison's not the "I want the spotlight" type, but is definitely the artsy, organized type. So this has suited her perfect. She starts softball in a few weeks herself. This will be her 3rd year, and she itching to get started.

As for Ava, well, she's shaping up to be a very busy little 2 yr. old. Even though we've been seeing quite a few breakthrough seizures, she's talking and learning at lightning speed (go figure). We changed the ratio on her diet (more fats, less prot. & carb), and it's seemed to make a slight difference, but we're still seeing too many breakthroughs. In the next 2 weeks we will be moving her up to a 4:1 ratio.

She's been sleeping beautifully the past 2 months and I'd really hate to start a med & have her go back to being massively irritated and sleepless. On the other hand, I'm ready to do what's best for her....whatever that means. So the next few weeks will be crucial for us.











1 comment:

baby trevor's mommy said...

Toby's 1st game is tomorrow! That's one happy thing about being in America...my son LOVES baseball. And the kids in TZ...they tried really hard to learn buuuut...

Toby ended up playing more soccer! *grin*

I'm SO happy that Ava's thriving! And I'm seriously proud of you for sticking with the diet! I can't even imagine!

I'm going to try & make it to the next Discovering ME meeting... I promise to not make any ignorant remarks...and only stare a little! *grin*

...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.