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.

Sunday, August 26, 2012

Back to the Hospital

Alice was still loading up her diapers on Thurs morning, 4 to be exact. So, we took her up to Primary's and the doctors checked her in. We think it is her GVH acting up again. She will be there indefinitely. They also placed her on a clear diet, which is always tough. However, Alice is always up for having a sleep over at the hospital. She settled in by climbing up onto the bed herself and pointed to the television and said, "Barbie Secret, Dad." So, while the nurses checked her vitals and Alice happily watched her latest muse; I eased into my own ritual of scanning the room and tried to remember how many times before we have had the chance to stay in room 4410. So far tests for bacteria and viruses have come back negative, but she still has a loose stomach which has puzzled the doctors. They moved her up to a Progressive 1 diet today, which means clears and a couple of selected vegetables. She is happy enough except when she is hooked up to the monitors. Hopefully tomorrow we will have more answers in regards to her levels and GVH.


1 comment:

  1. Hope everyone gets some rest tonight & answers & positive test results in the coming days. Love to you all & a kiss for princess Alice.