Friday, February 1, 2008

Here comes the sun

Sooo.....this past week has been a hard one. Ava started giving us a hard time with accepting the ketogenic food (guess we can't blame her). She pretty much refused food all together. This really took us by surprise, as she was doing so well with eating on schedule (every 3 1/2 hrs) for the first week home; we were totally blindsided.

That seems to be the way anything epilepsy related goes....highs, lows, happy , sad, happy again....and so on). You just never know what each day will bring.

We were out of our minds trying to make new recipes all week to keep her eating and on track. She got pretty lethargic and very acidotic as well, a repeat of our hospital admission. She held out for about 3 days (that's my girl)....but we finally found a few things she is willing to eat, thanks to my online Ketogenic Group. Both Matt & I spend quite a few days going to different stores looking for the ingredients we needed. I guess tofu noodles aren't a big seller in our town *LOL*

Friday, she finally began eating again. You've got to love those buttered up tofu noodles and pork rinds (our new potato chips)!!!!

All in all it was a very difficult week for all of us. There were so many times that we all just wanted to give up. Ava was so unhappy, sad, and downright sick. We all just wanted to go get her a bag of munchkins and a juice box to put her out of her misery.....but.....we love her too much give up on the only thing that's keeping her seizures away. So we all picked ourselves up by the bootstraps and tried like hell to make this work.

Ironically, the weather here in RI has been pretty gray for the past few days, but when we woke up this morning...the sun was finally shining.

On a side note, Matt & I attended the Snow Angel Ball this past Saturday hosted by the Matthew Siravo Memorial Foundation (
http://www.mattyfund.org/). All the proceeds for the event went to Brown University for epilepsy research. Both Deb Siravo and Richard Siravo have been a great help to our family, so we were glad to support the foundation in any way possible (and it gave us an excuse to actually get dressed nice!)

3 comments:

Jonathan said...

Okay...so two comments...

1 - you looked beautiful at the ball!

2 - wow...I needed to cry & reading Matty's story helped me do just that!

I hope you have a better week with the diet! I can't even imagine trying to force my 2 (3 today) yr old to eat anything other than chocolate or popsicles or chips!

...danielle

labonte4 said...

Danielle,

I am SOOO embarassed! I was working on the blog & thought I pressed the save, not publish. I read what you read and laughed...it was all in bits and pieces.

Anyway...thanks, and I just got done making a ketogenic muffin. She likes it, but what a pain in the neck!

baby trevor's mommy said...

keto muffins...yum yum! *wink*

btw...I'm the queen of re-editing my posts! even the one's that are, like, from months ago! not that i'm obsessive compulsive, mind you!

...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.