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.

Friday, November 8, 2013

Day 22--Room Air

ANC 2300, Hemoglobin 11.2, Platelets 43

Good day!  Alice woke at 10:30 a.m.  This is very early for her.  She was ready and excited for our planned outing.  She has decided to use some of her engraftment guessing money to get Natalie a birthday present. Tomorrow is Natalie's 10th birthday.  Alice wrote her a note on orange paper...Natalie's favorite color, then asked if she could get her a gift.  We decided to take our physical therapy session downstairs...to the gift shop.  We found the "orangeist bounciest ball". :)  Alice also managed to find something for herself--of course.

Another big step occurred last night.  She slept all night without oxygen.  This was another surprise to us. She has been on room air since yesterday morning...very encouraging.

We had some great visits today including; Barbie, then Aunt Amberly, Grandmother, and Grandpa.

Lisy



Alice shopping



Paying for Natalie's gift and her own, she decided to surrender the puppy dog for the purple purse.  Apparently when I suggested that she had a lot of purses at home...she didn't agree.



Transferring her $12.00 (engraftment money) to her purse.
Posted by at 12:00 PM

1 comment:

  1. Katie In NJNovember 9, 2013 at 11:30 AM

    Alice is the sweetest little thing for wanting to buy Natalie a birthday present! And she looks really good! I love her smile! Go Alice!

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