Tuesday, October 7, 2008


I apologize for just now posting an update. It's been a whirlwind of a few days. Hannah is home and recovering. She went back to school today and other than being a little tired which she will be for a while, she seems like she enjoyed the day.

Things will be a little up in the air for a while I'm afraid. Just a run down of what happened...Hannah went status on Oct. 1st and had to be intubated. She was then placed in PICU. After the status she ran 104 degree temp. They packed her in ice and rotated tylenol and ibupophen to try and get the fever down. It took an entire day for it to go down even with the ice. After the fever came down her CPK levels kept rising. They got near 5000. We stayed longer in PICU due to this level. While in Cook's they did some immunolgical testing as well as neurological testing. The preliminary tests came back alright. There are more extensive tests pending. We should get those back next week. We were released on Sunday to come home.

This episode was almost identical to the episode she had in July. That's two status episodes in less than 3 months. Not good. Her neurologist is concerned and is doing all they can do. The things we are doing right now are all we can do at the moment. Hannah has an appointment with her neuro on the 23rd to just review everything. We have an appointment with the epileptologist in April. Yep, you heard me, April. That's the earliest we can get in. The epileptologist specializes in epilepsy and will do some advance testing. His findings will determine if something more drastic than meds is needed to help Hannah like surg, etc.

On the 27th of Oct. Hannah will see the geneticist to see if there is anything genetic going on. We've been looking at DRAVET syndrome but Hannah fits some of the criteria but not most of it. There is a test that can be done too to determine DRAVET, and we will look into doing it as well. Just trying to get some answers.

The only problems since Hannah has been home is that the last three nights she's had nightmares. SHe's never had nightmares before. She is also breaking out in a cold sweat and is clammy feeling. The doctors seem to think the nightmares are trauma related. I mean this is the second time she's been through this in less than three months. They are suggesting therapy but

I'm not sure how therapy works for a child with autism. The clamminess and cold sweats they think are withdrawals from the narcotics she was on while intubated and trying to get the status to stop. Other than that she is eating alright and other than tiring more easily she seems to be doing fine.

We feel so blessed that we didn't lose our girl. Coming this close in less than three months is hard, I won't lie to you. I cried when I left her at school this morning. I just want to keep her close to me always. I think though that if something were to happen to her, say at school, I'd find comfort in knowing that she was doing or participating in something she enjoyed when it happened. As bad as I want to keep her close and safe, I can't. She deserves to live life to the fullest no matter what. I have to keep reminding myself of that. Hannah loves life no matter what happens. I can't stifle that with my fears.

We thank y'all so much for all the prayers, and notes of encouragment. There is no way to express our gratitude. This is much longer than I intended. Sorry! LOL!

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