Friday, April 4, 2008

The Miracle of the Moment

Everyone that knows me fairly well knows I'm a big Joel Osteen fan. It's actually become a big joke with most of my friends and family. The prank calls when I'm having a bad sister putting stickers on the side of our fridge of sayings from one of his mailings (which by the way was addressed to her!...sorry Beth...I've outed you).

When Ava was first admitted into the hospital to start her very first course of treatment with ACTH I read his first really encouraged me and helped us stay focused, and most importantly..positive.

I think one of the reasons I like Joel Osteen so much is that I love bold statements. I always have. I actually landed one my favorite jobs as a Purchasing Agent by bluffing (sorry Joel) on my resume because I just KNEW that job was perfect for me and I just couldn't live with the "what if"...I went for it.

I love dreaming big.....and EXPECTING nothing less than the best. So I'm sure you can imagine this has been a hard sell for the rest of the family, after all we've been through. That being said, even during the worst of times, I've always manged to roll out of the gutter and keep the faith (even if it took a few days....o.k.....weeks).

I still believe that our horrible chain of events in February happened for a reason. I would have never agreed to take Ava off of medication voluntarily. So when I found myself having a conversation with our neurologist about restarting meds, I really had to sit down a think about what my heart was telling me.

After a lot of soul searching (and reading some of my old blog posts), it didn't take me long to decide. There was NO WAY I was giving up this easily after all we've been through. Oh yes, and of course I had to ask myself WWJD (what would Joel Do)??? *LMBO* Thus....another bold statement.

"I don't care if we're syringing butter, making keto muffins until 2 am, or whatever it takes....we're going to see this through. If she can be seizure free on it once, she can do it again. So bring it on. It might not be today or tomorrow, but we will overcome this".

So, the past week Ava has been doing exceptional. A 95% reduction in seizures from where we were the previous weeks (we still see about 3 per day). Her energy is great, and her language has skyrocketed. In the past week she began speaking in full sentences......we are just shell shocked. She stopped rejecting food, and is completely healthy.

Right now we're all just enjoying the miracle of the moment.

Every moment we see her talk, laugh and play. Every moment we can breath easy and feel "normal" again. Most importantly, every moment we see with our physical eyes one of our bold statements becoming a reality......


baby trevor's mommy said...

I totally did not have you pegged as an Ostein girl!

And I'm SO thrilled that Ava is doing good! She looks so happy in her pics. Love that!


labonte4 said...

I really is funny. Our speech therapist Amy laughed about it too. What can I say....I just love that little preacher *LOL* Hey, on 60 minutes they said he can bench 260 lbs....that's got be be worth something???

My family teases me like crazy, but I'm still going strong *LOL* Ava's been doing so good lately. She's seemed to be acting weird after we started our Carnatine supplement we got from Bayview. I didn't give it to her yesterday, and today she's feeling great...go's always something.

JSmith5780 said...

Awesome news... she looks GREAT!!

baby trevor's mommy said...

Seriously? 260? That bean pole?!

Speaking of Bayview & such...they called to tell me we can't do a cream...evidently not enough of the vitamin is absorbed through the skin. So we have to do suppositories! So fun! ;o)


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.