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, February 13, 2013

Progression 1 Diet

Alice's diet advanced a little more today.  She is able to have apple sauce, canned pears, canned carrots, canned green beans, and cream of rice hot cereal.  She was very excited to have hot cereal.  She carefully enjoyed every bite.

Sometime later she had a melt down; she and the cafeteria misunderstood each other.  She wanted to order the food herself and thought they said she could have steamed rice with butter and salt.  When she realized that wasn't going to happen she bawled over the phone and was upset for sometime.  I rubbed her back, scratched her head until she fell asleep.  It was a much needed nap.  When she woke she said, "Mom, I'm really sorry, I just want to be happy."  Oh Alice what a sweet thing you are.  Imagine someone giving you large amounts of steroids (which make you terribly hungry) and then telling you that you can't eat anything....for several days. She is amazingly patient and cooperative considering her situation, despite the emotional meltdowns.

Tomorrow is Valentine's Day...she is so excited.

Lisy

Enjoying some hot rice cereal...Yummy!

Posted by at 4:59 PM

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