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 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

Monday, January 21, 2008

So Far So Good

Well, we're day 5 into the diet and things are going pretty good. We noticed about 5 or so eye rolls this morning, but no falls. She had tons to drink during the we're going to cut back on her drinks tonight to see if all that extra fluid affected her seizure control.

Poppie came over for dinner last night, and couldn't believe how nice it was to not be constantly worrying about Ava falling. We've been letting her walk up and down the stairs and not stressing about her going into the bedrooms by herself.

I usually hesitate saying things like this after all we've been through.....but I really feel like we have our lives back!!! Ava was having anywhere from 15 to 40 falls per day before the diet. She even had a pretty nasty partial our first night in the hospital. We're all just in total awe of the extreme change in seizure control we've seen in less than a week, even with a few minor ones popping in.

She hasn't fallen one time since we left the hospital (that was seizure related)...although she has had no problem tripping over her toys. She did, however go out of her way to pick an old french fry out of a crevis in our car and gobble it down before my arms even moved!

Thank you to everyone who was praying for us, and to everyone who encouraged us.

It's just one day at a time.

Friday, January 18, 2008

We're Home!!

We're home!!!! After five long days...we're finally home! After all our hesitation about starting the diet at Hasbro in all worked out. Ava spent the first two days hypoglycemic and went in ketosis so quickly she became pretty acidocic, but with a few cc's of apple juice and some meds to control the acidosis...we were in business. She completely refused any food or fluid for day 2 and 3...and we were really beginning to think this might not work.

After clocking in some serious time in the chapel *LOL* and some serious patience (and a visit from her brother and sister) she finally ate. She threw up the food immediately....but it began her eating, and we've been on track ever since.

I'm definitely too tired to write anymore...but here's a few pics.

As much as we thought we were was a lot harder than we thought.

Saturday, January 12, 2008

The Keto we come

It's now less than 48 hrs. before Ava will be admitted to Hasbro Children's Hospital to start the Ketogenic Diet for her seizures. Ava has anywhere from 10 to 40 "mini" seizures per day. They last about 3 seconds, and she falls forward quite often because of these seizures.

All this time I really thought I was ready for another hospital admission, but I think we all forgot how stressful a hospital stay is. I guess there is just no way to prepare...just jump in head first.

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.