Monday, May 4, 2009

I Love You Mommy!

I Love You Mommy........

Those 4 word I feared I might never hear. Those 4 words that I thought for sure the epilepsy would most certainly steal from me. My heart can only bring me back to when she was 2 years old....hardly talking....still.....not saying her name, and riddled with seizure after seizure with no light at the end of the tunnel.




and pain.....

for ALL of us.

It's taken time, a lot of hard work, patience, acceptance, and, well, a lot of extra love...but....she said it. And she says it all the time now...............

I Love You.

Is it totally wierd that regardless of the epilepsy (that we are always struggling to get control of) and all the major set backs we've had. I'm proud. Proud of her...for perservering through days of non-stop seizures, migraines, and yucky ketogenic food.

Proud of my other children...for trying to make this work.........

Sacraficing for her......for our family...........

Proud of my husband for providing for our family during these hard times when her medication cost more than our mortgage......

And maybe it's selfish of me to say...but......... proud of me.

For keeping the faith.

Believeing in her.

Believing in God.

and....well......believing in the referigeratior.

The verse I have taped to it.

"Through faith and patience you will inherit the promise". Hebrews 6:1

Maybe you might ask. What is the "promise" ? Well..that's the whole thing. I've had that verse there for almost 2 years now. Some days the promise was t0 get through the day...and other days it was having the grace to use my last nerve to mediate a fight between the other kids and still keep my cool.

Yet, the big picture always lingers. The "end" result. Will Ava be O.K. Will she grow up to be "normal". Will her body ever live without seizures.

That.....I don't know.

But what I do know is each day I look forward to God's promise for me. I look for his mercy and favor in every step I take. Even on the bad days. I look for his peace. ...which some days...IS my promise.

I'm grossly optimistic..even though my odds aren't with me.

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.