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, April 2, 2014

Climbing Counts

Alice had a good day in clinic, it was a fast visit.  We will continue to give her another week without tube feeds because she has made some bits of progress in the past couple days...less vomiting and more eating.  She really only wants to eat a few items, but if she will eat them, we are happy.

Counts were good and we have decided to cut the Neupogen back to once a week, also cut her nightly fluids in half.  This will give her more urge to drink and possibly eat more.


Next week we hope for more good news.


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