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, September 29, 2013

Coming Home

SUNDAY

Yipee....We are coming home!  Alice is happy to go home, she misses her family; however, she is glad that she gets to return to the hospital in 9 days.  I'm sure after this next hospital stay she may change her mind about how much she loves to be at the hospital...she will be quite ill--but who knows, she may still find ways to like it.  The ICS staff have played a HUGE role in her loving the hospital.  Many thanks to them!


She wanted to dance for Evie.




Singing her favorite song.




We will come back to clinic on Wednesday and check her platelets as they have been dropping sooner than we expected.  With the infusion of platelets yesterday they bumped up into the 70's.  Hopefully this will hold her over until we come to clinic on Wednesday.

Alice's nurse Shannon took this picture of her...Alice later took 12 pictures of Shannon.

getting ready to go home.



Evie at last!
These girls got dressed with t-shirts, swimming suits and tutus.






Lisy

2 comments:

  1. What a precious princess! Alice and your entire family continue to be in my thoughts and prayers. It was a privilege to meet you at PCMC and we are certain that mighty miracles await! Janet Rowley (Eli Jorgensen's grandmother)

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  2. Oh my heavens!!! We've watched that little song about 8 times!! What a sweetie!!! We continue to pray for your sweet Alice and your whole Fish family. :)

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