The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Wednesday, February 15, 2012

Owies and Cheetos!!

Alice has adopted the word "owie" a lot lately. She has developed diaper rash. When I change her diaper I avoid wipes and just give her a mini bath each time to wash with warm soapy water. Which has been about every 30 minutes today. She likes the bath. Then I let her air dry on my lap for a while...needless to say I have changed my clothes a couple times today because I didn't get her diaper on soon enough.

Like Alice now, I remember Natalie crying in pain each time she needed to use the potty. The mucositis affects the entire track throughout the body. This phase felt like it lasted forever with Natalie. I'm so sad for Alice.

She ate some cheetos today. That was good. They didn't stay down but at least she had an appetite. Of course they don't want anything healthy...Natalie's first food was Doritos.


Lisy
Posted by at 10:23 AM