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, February 17, 2013

Going Home

What a wonderful surprise we received today.  Alice is coming home.  Yesterday the doctors mentioned she may be able to go home today, I was so excited but didn't want to count on it until it was official. and it is...Yeah!

She is taking all her medications by mouth except Caspofungin and Magnesium.  Alice was taken off TPN yesterday and she did well.  She eats plenty.  She is still on a mild diet and will be for a little longer.  She will be on a low lactose and low fat diet.

Alice's gut biopsy, from two weeks ago, showed no signs of Celiac.  We are thrilled about this, and assume because her gut was so damaged by the Graft vs. Host disease we found it difficult to distinguish between gluten issues and GVHD.  Any-which way I suppose it is wise to not overdo any one item in a diet.

We still await her bone marrow biopsy results.  Her next visit to clinic will be Thursday this week.

All in all, Alice feels better and looks better!

Lisy

Getting ready for the day and anxious to go home

Saying Good-Bye, Tabitha, Manny and Makenzie

We found this sign on the door when we arrived.



Posted by at 8:30 PM

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