Friday, February 22, 2008

We're Home

Sorry it took me so long to update....so here's our latest. We arrived home from the hospital on Monday, February 18th, after a 15 day stay (13 in intensive care).

Ava's been eating all her meals, and recovering nicely. We've seen no seizures since we came home. So five days seizure free.

I've been trying to sum up this experience we've had, and the only thing that comes to mind is a quote from my one of my favorite novels:

"It was the best of times, it was the worst of times".

Right now, this is just so surreal to us. Before our admission to the hospital, we were fighting to get every meal down, and she was rejecting most of them. We were on a hefty dose of Keppra, and fighting to get that down as well. She was still having seizures, and we were stressed to the max. We wanted to give up. It just seemed too hard. Our daughter was miserable, and so were we, but we kept at it.

For the past 5 days, things have been good. Really good. In less than a week we will be off all anti epileptic medication, a place I never thought we would be.

In the past, I was always too scared to even tell anyone we were seizure free. It always seemed like right as the words came out of my mouth, everything would come tumbling down.

Looking at it in retrospect, it was a test. A test I failed, every time. It took almost loosing her for me to realize that I have to live, walk, eat, and breath......faith.

FAITH............

The one thing...I was sure I had down pat. Since the first moment I heard the words out of the Dr's mouth, deep in my heart, I've always believed that some day.....maybe today, tomorrow, or years from now.....we will overcome this obstacle.

I believed, but never stood up and claimed it, for any of us. I just let my circumstance get the best of me. Fear ruled my life. Fear of the future, mainly. Will my daughter ever be "normal"? Will she ever get married? Will she ever be able to live on her own? And most importantly....

Will she ever really, truly, be happy?

So through this experience, I've come to understand that all of those questions have already been answered. I believe that we were all born to serve a purpose, and as long as we do our part as parents, Ava will walk into hers...whatever it may be. I don't know why she's had to suffer so much in so little time on this earth, but already, she has really touched so many people.

After everything, I feel really, truly grounded, for the first time since this all began. So if we do have a set back, I know we can handle it....the right way.

I learned the hard way (still waiting to meet a person who learns the easy way *LOL*)how to stay at peace during a storm. During the first week of the admission, I was a total basket case of emotions.

Once I got sent home with the flu....I really took that time to seriously reflect on the circumstances, and really have the courage to be true to myself.

I've learned so much through this illness; stuff that might have otherwise taken months or years of little things. The pain sucked.....but we're all better because of it (even Ava)

Until recently, I never truly understood the quote by Freud:

"One day, in retrospect, the years of struggle will strike you as the most beautiful"

5 comments:

baby trevor's mommy said...

I LOVE that picture of Ava in the window! She looks SO happy...and beautiful!

I'm so happy you chose to blog, Rebecca! You're a wonderful communicator...and it helps me to "feel" with you. It's true courage to be transparent.

We'll have to get together - eventually! :O)

...danielle

Kara said...

Ava,
We are glad you are home. Your strength and your Mom's strength have inspired more people than you will know.
Welcome home baby girl!

Love,
Avery' mom

Kara said...

P.S. Tell your brother he stinks at skating!!!!!!

baby trevor's mommy said...

pss. okay so two of the names we tossed around for Bristel...

Ava

AND

Avery

:O)

JSmith5780 said...

So hard, after all you've been through, but all I can say is congrats. Congrats on finding faith, congrats on making it through these 2 weeks, congrats on getting off meds amd congrats on being 5 days SF. I hope it continues for Ava.

Jen
blogs.timesunion.com/austinbenconnor

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.