Thursday, July 23, 2009
Friday, July 17, 2009
Thursday, July 9, 2009
Thad and I have decided to start a blog for Katie. As Katie progresses more in her disease, Niemann-Pick Type C ( NPC ), we are wanting to keep our friends and family informed on what's happening in her everyday life and to also have a record of all the cute things she says and does.
So here it goes...
For those of you who don't know, Katie has a rare genetic disease called NPC. Our son Andrew died from the same disease 4 years ago, he was 9 years old. Katie is doing really well. Our main concerns right now are her enlarged spleen and she's started to fall down a lot more.
Today we had an appointment with the mobility clinic at Children's Medical Center of Dallas. We are getting Katie a special needs stroller that tilts and collapses for easy storage in the car. She is also getting a car seat that will help support her head. We are also getting a blue rifton walker that we can strap her in so she won't fall. Also a bath chair that will make it easier to get her in and out of the bathtub ( for later). She is very excited about her new equipment and so are we.