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, October 30, 2013

ANC 300, Day 13

Another day brings good news.  White count keeps climbing.

Her breathing at night is very loud and she drools everywhere.  The loud breathing is a sign that her throat and mouth have white cells healing and recreating the cell linings...the inflammation from this process is causing her to breath loudly.  If this is what it means, I love that sound. :)

Physical therapy played some games with her, which required her walking around the room a little...every little bit helps.

Aunt Amberly came to visit...she didn't want her to leave, again.  She and Amber got a good laugh at the spooky Halloween house I put together from graham crackers and frosting, Burchalls brought it to her yesterday.  It kept falling apart on me, Alice laughed and laughed each time the walls fell over.  Finally when I finished it, she looked at it, then insisted that I redo it...not good enough.  So we gave it more time for the frosting to dry before attaching the roof again.

No blood or platelets today.  No fevers in the past 24 hours.

We are praying this trend continues, as many of you are...so thank you!


Lisy



5 comments:

  1. I love this news :) I just read your last two posts. Yay for Alice! My kids, ages 9 and 11, think she is the most adorable little girl ever. You are in all our prayers!

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  2. Such wonderful news! Our hearts are jumping for joy! More love & prayers your way.

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  3. I love these good news posts!!!!!!!

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  4. That is great news! I am so happy that she is doing so well :)

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