Saturday, February 16, 2008

Waiting to Exhale

Today Ava was transferred to the "floor" and out of the PICU. She is breathing nicely, and is on very little oxygen. She actually ate three of her Ketogenic meals today, and I had them feed her meal four via the NG tube...(I must admit that I'm really going to miss the convenience of that when they take it out).

Ava stood up independently today, and was quite talkative when her brother and sister showed up for a visit.

When I think of where we were at this time last week......and where we are today.......I'm just completely amazed. There are truly so many families suffering there in the PICU. The sounds of mothers crying all though the night, and buzzers constantly going off. It's just not a place I want to be again any time soon.

I am truly humbled, in every sense of the word. In all honesty, my heart was breaking for all of the other families that were "new" to the hospital, and really having a rough go of things. After all, it's an old shoe for us. Although, by far, this has been the most difficult hospital stay we've ever had.

We could have lost our baby..........but we didn't.

I completely attribute her speedy recovery to each and every person who prayed for Ava during this time, and to my mother, who instilled a firm foundation of faith into my heart (and of course to the wonderful PICU doctors and nurses at Hasbro Children's Hospital).

We're hoping Ava will be home tomorrow, after almost a full 14 days in the hospital (13 in the ICU).

So we're just sitting tight, and waiting to exhale. We can't wait for you to be be home, Ava.


Kara said...

Welcome home Ava! (if it happens today!)
You are one strong little girl!
You should be proud of your mom and dad for being the bestest in the world!
We look forward to seeing you!

Kara & Company

gabandrewsnana said...
This comment has been removed by the author.
gabandrewsnana said...

Dear Ava,
PTL, He answered our prayers! You are going to have such an awesome testimony! I am here with your cousins, Gabby & Drew, they are so happy to know that Ava is home. Gabby says she is happy you are not sick anymore. She really misses you! And Drew is loving your pictures on this blog! We can't wait to see you again!Welcome home and don't forget we love you! I am sure you are happy to be home, in surroundings that are very familiar to you! Continue to be strong and believing in the power of prayer!!
Lots of hugs and kisses from us,
Gabby, Drew & Ms Millie!

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.