Sunday, February 10, 2008

Our Biggest Obstacle

As most of you know, Ava has been in the Pediatric Intensive Care Unit (PICU) at Hasbro Children's Hospital for one week today. On Saturday, February 2nd, she had a major seizure which we were able to control at home. She began spiking fevers all day on Sunday, which had us giving Tylenol and Motrin round the clock. She had another major seizure Sunday night, which we couldn't break, and we arrived at the hospital via rescue around 2 am. The oxygen level in her blood was lingering around 77 in the rescue (very scary).

She stopped breathing several times in the trauma room. She was moved to the PICU where they told us she tested positive for Influenza. On Wednesday she developed pneumonia, and Thursday night she was intubated, and began showing signs of sepsis. Matt and I had been there together at first, and he had went home to be with Madison and Christian and get some rest while all this went down.

Thursday morning, after a record 5 nights of no sleep, I went home and began feeling extremely ill myself, and after a quick visit to the Dr., tested positive for Influenza.

So......I'm here at home, praying for my baby and trying to get well.


Today, she is breathing over her vent, has had no further seizures (other than the one we were admitted for), and the sepsis seems to be clearing up, by the grace of God.

There is so much more to the story, and a million things that have happened, but I'm still really exhausted. Here is the letter I gave Matt to read to Ava from her mommy:


February 9th, 2008

Dear Ava,

From the first moment I laid eyes on you, I knew you would be such a blessing to our family.

I love you more than I can say with words, and my heart is breaking for you, my precious baby.

Christian misses you so much, and wants you home so badly. Madison loves you more than she shows. This is so very hard for her to see you hurting, Ava.

Ava, God has put his blessing upon you, and we know, that with him, all things are possible. Our faith goes beyond what we are seeing on the outside.

Ava, I am sooo proud to be your mother. You always have stood up to your obstacles and are always so brave in the most difficult situations.


Ava, I have begged to take your pain and suffering from you. I would give my life for you to stop suffering, but that's not what God has in our plans, and we have to trust that his plans for us are of good.

Ava, we will speak to your mountains and take this illness and cast it to the sea. We are speaking only life and health over you. God's ways are higher and better that our ways, and we commit you whole heartily to him. We know Jesus has already overcome this illness for you.


I refuse to be scared any more. After all, God has not given us a spirit of fear, but of power, love and sound mind.


From the first moment you were diagnosed with Epilepsy, I knew in my heart you would overcome.

Ava, I believe.

Ava, you are my sunshine on the darkest day. Our family just doesn't work without you here, so please get well soon.


Love you..



Mommy







3 comments:

baby trevor's mommy said...

Rebecca...
I can't even find words. Part of me wants to try...the other part knows there just aren't any.
I've been having this inward struggle...because Trevor has been doing so good that I feel like I should be happier. Less scared. More blessed? But that's the thing...it's scarier to start feeling "okay"...because I don't know if my heart can handle another break! I'm so sorry that your's is hurting!
You...and Ava...and the rest of your family are in my prayers today!
You courage...and strength...and honesty...are such an inspiration to me, Rebecca!
...danielle

Kara said...

Know that we love you and are here for you whenever you need us.
Ava is in our prayers.
Avery misses her BFF!
Remember I am a phone call away!

Love,
Kara

Kara said...

Rachel wanted to send you a message:
I miss Ava so much. I wish she was with me right now. She is cute and funny. I feel sad. I hope she gets better sonn.
From,
Rachel

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.