Kaitlyn's Korner: Waking up

Thursday, February 10, 2011

Waking up

Kaitlyn has been breathing well on her own and they have stopped her sedation medication. She was agitated at first coming off of the medicine as I'm sure she didn't know where she was or why she was hurting. Once they gave her some pain medication, she was much more comfortable and she was even awake for about 10 minutes. It was a really great sign that she was interested in seeing and interacting with her books and balloons. We are able to give her clear liquids using her bottle so hopefully that will also give her some comfort. We will also be using the G-tube for feedings but for right now we want to do a little of both to make it less traumatic of a transition for her. Here are some pictures from today.

Balloons from Daddy!

Reading a book, one of her favorite things to do.

Awake but still a little groggy.

Us.

3 comments:

KirkKrewFebruary 10, 2011 at 8:21 PM
She's so sweet! I'm glad her recovery is going well. Sending love from Texas!
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UnknownFebruary 11, 2011 at 9:27 AM
This is the most wonderful sight I have seen in days, God is so AWESOME.
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ChelseaJuly 24, 2012 at 3:17 PM
i am crying seeing Kaitlyn reach out for her book. I did not get to know Kaitlyn when she was able to do that, it is so precious
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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.