Kaitlyn's Korner: Kaitlyn is in surgery

Wednesday, February 9, 2011

Kaitlyn is in surgery

Kaitlyn is officially in surgery right now. She did really well getting prepared for surgery. The staff brought her a special doll and a blanket for her which was a really nice unexpected touch. We got to spend some good time with her before surgery and got to take a bunch of pictures of her. We were also able to walk with her to the OR room and she was smiling the whole way. Here are some pictures of her from today.

The doll on the right and the blanket behind her were the ones given to her by the staff. It definitely helped to distract her to have new things to look at and play with. The teddy bear is very special to me (Deanna). My great grandmother gave it to me when I was born and I used to take this bear everywhere with me. I even have pictures of me out in the snow as a kid with it. I really wanted Kaitlyn to have it with her since it is from her great, great grandmother. I know her spirit is with her today.

Having fun with daddy and playing with her new doll.

Special time together. I love that she was so happy this morning. It meant so much to me.

Sharing a special moment with daddy just a few minutes before going to the OR.

9 comments:

MissyFebruary 9, 2011 at 12:58 PM
These pictures are so sweet! Thank you guys for sharing! I know seeing her off and waiting must be SO hard. We are praying for her now!!!
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JessicaFebruary 9, 2011 at 1:02 PM
Praying for you guys!!
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The KasparsFebruary 9, 2011 at 1:09 PM
Aw! These pictures are so special. I'm praying that everything goes well and that you'll have your smiling girl back in your arms soon!
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KristenFebruary 9, 2011 at 1:13 PM
Still praying! I love the bear, Deanna. That is so special!
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AudraFebruary 9, 2011 at 1:15 PM
Praying surgery goes well!
Love all the pictures, you guys are in my prayers constantly. Stay strong!
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Chris and CarlyFebruary 9, 2011 at 1:40 PM
She looks so sweet and happy. Thanks for sharing the update.
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UnknownFebruary 9, 2011 at 2:57 PM
Sweet pictures Deanna, praying for a smooth and uneventful surgery!
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annancFebruary 9, 2011 at 4:10 PM
I'm so happy for you that Kaitlyn was in such good spirits this morning. Sending good thoughts your way.
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AnonymousJuly 24, 2012 at 3:07 PM
those are the most precious pictures, her smile makes my heart melt! how sweet the hospital gave her presents, that is how all babies should be treated when they go to the hospital
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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.