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, September 24, 2014

Clinic

Alice went to clinic today...her first time since her line was removed.  Thus, she had to have a needle poke.  She cried, but did well.  Also she had a flu shot.  Double poke!

She is doing great.  Labs are good.  She will continue the antiviral medication (Val-acyclovir) for another month.

Counts:
ANC 2400
Hemoglobin 11.5
Platelets 198

Alice's next appointment isn't until October 20th!  I have to admit, now that her clinic visits are not every week...on the same day each week, I am having a hard time remembering them.  In fact, we missed it earlier this week and had to reschedule.  Maybe we are adjusting to regular life more than we realize.  Actually it seems more appropriate to say it is my post baby brain.  I forget everything else too. :/

Lisy



Here are some updated pictures of our little man!
We can't get enough of him.  Six weeks old.




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