Monday, December 21, 2009

Torn about the epi visit today's appointment was interesting. First we had to have a blood draw and I'm telling you this girl is such a trooper. She watched the lady stick both times and didn't even flinch. When it was done she told the lady Merry Christmas and bye bye. The epileptologist has decided against a hospitalization and testing in January. It's looking like we'll do it in June instead. There was a lot of conversation today about quality of life, etc. Hannah's still having seizures but she does have better control and we have not experienced a status since June. Versed, so far is working and stopping the prolonged seizures. THANK GOD FOR THAT! He suggested that if we can keep the seizure control we have now or even improve it, we can afford to step back and really do some focusing on development. He suggested we see a neuro psychologist, and mentioned the Child Study Center in Fort Worth again. I'm going to look around some just because I've heard both good and bad things about the Child Study Center, and I know the price quoted to us for first visit and testing was rather steep even with our insurance. I want to see if there may be better places and more reasonable places to have the same things done elsewhere. So, if any of you know of any or have any recommendations I'm all ears!

I do know that we need to focus on development and that we have focused so much on medical that a lot of things we could do for our girl's cognitive abilities have been put on the back burner. Dr. Malik talked today about how he felt that we can afford to take a little more time to focus on some of her development so she can have the best quality of life possible. If she starts having the status seizures again then we'll change the plan. It was hard to be upset at him for taking this approach because I could tell he was really thinking about Hannah and what was best for her. He really wanted to give her a break from medical procedures, etc. Felt she deserved and needed it.

I'm torn because a big part of me wants to do both. I want to work on the development and the medical. I want to find complete siezure control and still do all we can to help Hannah's quality of life and development. However, I'm deciding to see this as the blessing it can be. I am going to be thankful that we have gained enough control over her seizures that we now can look to improving the other areas that have been neglected. I had the best time with Hannah today and all the way home I thought about a day when things were not like this with her. She barely spoke, she hardly played with toys, she wasn't even aware of Christmas and could have cared less about the gifts under the tree. Not this year. She's so excited and we're all loving it.

She's still not feeling real well but tonight has been better than the last few nights. She's coughing less and was more playful today than she has been. I'm hopeful that she'll be close to 100% by Christmas.

I really thank all of you for your prayers and support. Please continue to pray for Hannah's health and improving seizure control as well as our efforts to help her developmentally. It can be rather daunting when you start tryinig to find the "right" things to help a child with autism. I can spend hours and hours and hours researching and reading about all the theories and I enjoy doing that, but it is overwhelming and so hard to decide a direction to take.

I'm rambling on tonight. Sorry. Just so much to think about...Love you all!

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