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Tuesday, March 24, 2009

Genetics and a Mount



Hello-


We went to see a geneticist today after waiting nearly 6 long months for an appointment. She of course asked a ton of questions and after thinking for a while and reviewing labs and charts she came to the conclusion that Stacey most likely has a mitochondrial disease. The Mitochondria is the powerhouse of every cell in your body. So she ordered some labs and we got them done while we were down at the hospital. The bummer is that the labs take 3 weeks to get back. A few of them come back sooner but they aren't the ones that could diagnosis the disease. We will be on pins and needles for the next 3 weeks. The doctor said that Stacey doesn't have Cerebral Palsy she just doesn't fit the bill. If you have any questions please don't hesistate to ask. I'm a little lost myself and not too sure where to turn from here. I know that it's all in God's hands. On to the next topic...


So for about a month and a half I was going round and round with the insurance company about approving a mount for Stacey's wheelchair that her Springboard would be attached to. Seems logical right? And a step in the right direction to some independence. Well they wanted the paperwork sent to this person and that person and to this company and that company and it seemed to pretty much anyone who knows Stacey. So I was getting slightly irritated that they were dragging there feet so hard into the ground. And called our local Assemblyperson on a Wednesday and that same Friday it was "magically" approved and on Saturday I had the paperwork in hand and on the following Friday I had the mount in my physcial posession. Now what was so hard about that...lol And it's installed on her chair and she is just in love with having her Springboard at her access at all times. It's such a huge step for her. Here are a few pictures I took tonight of her using her Springboard on the mount.


Please continue to pray. I really hope these tests shed some light on what is going on in her little body, as many of you know we aren't looking for a cure just an answer and to make sure that quality of life maintains at it's highest. And above all I love Stacey to pieces and she is so precious to me. And she was created in God's image as we all were and that is just fascinating to me. How amazing that when you look into your child's eyes your getting a look into God's eyes.




God Bless,


Cherice, Stacey and Sunny






1 comments:

TheTanksOfWrath said...

definitely praying for you all! you guys are amazing...and stacey is such a strong little girl who i'm sure has touched a lot of lives already!!