Kaitlyn's Korner: Doing Better

Tuesday, April 5, 2011

Doing Better

Kaitlyn is doing much better than she was yesterday. Her spirits are getting better and her fever is gone (with the help of Motrin and Tylenol). Her counts are still the same which is fairly good. At least they aren't getting worse which was our main concern. She is tolerating her feeds but we are trying to get her some extra hydration today with Pedialyte. She is completely off of the monitors, which makes holding her a lot easier and I'm sure way more comfortable for Kaitlyn.

If she continues to do well, we may be able to go home and then follow up with her hematologist to have her counts checked to make sure she is still getting better.

1 comment:

DadApril 5, 2011 at 3:47 PM
Sure glad things are looking up. Josh and I were planning on coming down Sat to see you guys for the day. Hope that's OK...........She sure is a strong little girl. Certainly seems to take everyting in stride well. Much better than I would. Love you both bunches! Dad
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About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.