Monday, February 15, 2010

The Losts Posts and Our 360 Degree Experience

I've just posted all my "lost posts". Drafts I started and never finished. Thoughts I wrote down but for some reason..just didn't want to share in this forum.

One of which was a letter I composed to Ava's Neurologist. I never had an opportunity to give him that letter...because only a few short days after that Ava ended up at Hasbro Children's Hospital for one of the most difficult stays we've ever had.....and we've had many. So lucky for me...I just told him face to face.

She was having 300+ szs per day and as soon as they saw her in the Clinic..she was admitted immediately. Banzel (Rufinamide) proved to be an absolute disaster for her after 8 terrible days. So to make a long story short...she is off the Diacomit (Stripentol) that she had been on for the better part of 2 years and began Zonegran (Zonisamide) along with her regular regimen of Topamax (Topiramate) and Clobazam. We also re-initiated a Modified Atkins diet.

It seems as two years time we've had a complete 360 degree experience and we are now back to square one. Back to the same exact place we were 2 years old.


Since leaving the hospital we've had a week or so honeymoom with this new regimen. Little to no seizure activity....a cruel trick this game plays on us from time to time. I must say.....we've had other honeymooms before.......

6 weeks with ACTH......Like the first honeymoom...just when you start to relax it's time to go back home....and boy did we ever!

6 weeks with Keppra.....the unplanned cruise type....your so happy to get away that you don't even think about going home until it slaps you in the face.

Then a quick little trip with the Ketogenic Diet.......the weekend get away.

but this one.............

this one was like a trip to Paris. Something we saved up for a long time. I don't know when I'll have to go home, but I want to stay as long as I can. I want to see the whole city, every street every corner. I want to memorize everything so I will never case we never get back. I need to make one more memory, take one more picture so I can remember it forever.......because eventually..........we must go home.

Slowly but surely the seizures are creeping back every day, but it's these little honeymooms that keep me going. Striving to find a way to hold on to a stable medical place for her. Although....I must admit. In the two weeks of this honeymoom a harsh reality came down on me like a ton of bricks.

Giving all of my time and energy into fighting to get her seizure free has given me little time to think about what will happen when she is.

If she ever is.....

These past two weeks have given me a lot of time to think about just that.

Especially when I came across some preschool projects Christian did when he was four. Then the thought crossed my mind.....what if Ava can never read......

When the seizures are at bay, and you have what you think you want...what has been THE most important priority in your life for are now scrambling to pick up the pieces of what is left of your baby. After this "thing" has taken all of the best parts.

The most precious ones.

The ones I wanted.

The ones that were OURS to enjoy and cherish.

The most important ones she needs to live a normal life.

the Epilepsy stole those away from us.....and I'm just soooo mad, but more than that, I'm heart broken down to the very core of my being.

I feel like I'm morning the loss of all the dreams I had for I can make a place for new dreams.

And this my friends appears to be much harder that simply fighting seizures. That I know how to do.

So to all my friends in a different place in this journey then us. I understand why you are still struggling emotionally. This is so much more that just getting your child free from Epilepsy. Its picking up the pieces.

Dreaming new dreams.

Letting go.....

Holding on.....

and so much more.

Even though we are far from ever being seizure free.....I'm beginning to realize being seizure free might not be as easy as I thought after all.

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.