Thursday, October 30, 2008

Geneticist & Stuff

It's been an interesting week to say the least. We saw the geneticist on Monday and she agreed that Hannah seems to have DRAVET syndrome. So, we then had a frustrated moment when she informed me our insurance would not cover the SCN1A test we needed. She also felt like Hannah had extreme hypotonia in both hands and quite a bit in her ankles. So, I left her office with a promise to help me in any way with my appeals to get the testing done. Luckily, the pediatrician that is my parent sponsor from the Idea League was a HUGE help to me in guiding me to talk to the right people. Yesterday I spoke with a representative at a different lab that can also do the testing and they are working to help get the insurance to pay for it. It just makes things easier when you know you have people in the ring on your side of the fight. So, we have the ball rolling in this area anyway.

Having DRAVET doesn't really change Hannah's treatment but it does help us know which drugs to stay away from, etc. The hardest part is the realization that she will never outgrow her seizures. Hannah is by far not the worst DRAVET child out there. Some of these kids have hundreds of seizures a day. The part that has us concerned is that some DRAVET kids have really long seizures called status. These seizures can cause death. Unfortunately these are what Hannah experiences. She doesn't have alot of seizures but when she does they are these life threatening ones. She will be one of only 500 known cases in the US. Incredbible. We have hope though because we know Hannah has responded to the right drug in the past and we beleive that she can do that again. We just have to keep praying and hoping. You can read more about DRAVET at

I've been wrestling and wrestling with finding therapy resources for Hannah in our area. On Monday a friend sent me a link to a special needs ballerina program and when I checked it out I found camp hope therapy program which can give us everything we've been needing therapy wise for Hannah. I'm working to set up evaluations now. They have gymnastics, the horse riding therapy(can't remember the name), and dance programs too. It's just a really neat program all around for kids with special needs.

I typed up an FYI letter for Hannah's pediatrician just to kind of keep her in the loop about everything and asked some questions. They are referring Hannah to Scottish Rites for the low muscle tone. They'll evaluate her and if anything is needed they'll provide it. If nothing else, at least when another doctor comments about her muscle tone I can say she was evaluated by Scottish Rites already and there was nothing we could do, etc.

We're only 4 months from going to get Hannah's service dog. I'm putting the finishing touches on her video.(Thank you Rachael for loaning me your camera!) Some have asked, and yes we do still need help with travel expenses, and dog supplies. To get a tax deduction for your gift you can send the check to Central Baptist Church and make sure they know it is for Hannah Chapman. We'll be having other fund raisers soon but I haven't put them together yet. I'm so not begging guys. It's just easier to let everyone know in one place than answer the emails individually. I'm not lazy, just swamped. Forgive me please.

Central Baptist Church
PO Box 263
1100 Old Bynum Road
Hillsboro, TX 76645

Thanks for your continued prayers and support. We know we could not make it through any of this without it!

No comments: