Thursday, December 01, 2005

Madison's Appointment

I sent out this E-mail but thought I would post it here just for anyone who missed the e-mail.

Hello everyone! Well, Madison had her appointment for genetic testing today. It went a lot better than expected, she didn't even get tested! He examined her and felt she had no signs of having anything but albinism. Her muscle tone looked good to him and he felt all of her measurments went well together. He said we could still test if we want but he really didn't feel it was necessary, so we decided not to put her through it. He did say that she does have Oculocutaneous albinism, which means it affects her hair, eyes, and skin. It is also known as "complete" albinism. We thought all along that her problems were just due to the albinism and now we feel we know for sure. She will grow up to have a "normal" life and wont be developmentally behind because of the albinism. In the first year or so she will do things behind as she gets used to using her eyes and finding out which way to tilt her head so she can see the best. She will have vary fair skin and white hair, eyelashes, and eyebrows. She is beautiful and always will be!

In some other good news Maddy is working on sitting up!!!! This is one area where she is a little behind. She started doing it for a few seconds at a time last night and today she did even better. This afternoon she sat up for a good minute! We are still having problems getting her to eat solid food, she acts like she doesn't know what to do and by this age she should. When she goes for her barium swallow(now on the 14th) we will speak with a therapist about that. We are also trying to get in touch with Early Childhood Intervention so they can help her stay on track.
I haven't been feeling well the past couple of weeks so there aren't many November pictures of the girls on my site. Hopefully December will be better.

Anyways I hope everyone has a wonderful rest of the week! Take care everyone
Casey, Chris, Emma, and Madison

1 Lonely Comment:

Kristen said...

Glad to hear that all is well, and that Maddy can get the early help that she needs with her development.