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.

Thursday, October 25, 2012

The Purple Cast Comes Off

Alice went to the orthopedic doctor today.  The x-ray indicated more healing.  The lower inner part of the bone has begun to fuse together.  The top portion is coming along, however, needs more time.  The doctor removed the hard cast.  We considered leaving it on longer, although did not because she walks on it anyway and it creates more risk of falling because of how tricky it is to walk on. The boot will be easier for her to get around and will protect her leg equally.  In two weeks we will return to the doctor and check her leg again.

I was so happy to give her a bath and wash her leg.  Baths were tricky even before she broke her leg, then the cast complicated things more.  We can't get her chest wet (Broviac line) we can't get her ears wet (ear tubes) and then we couldn't get her leg wet.  This left us with very little room to wiggle.  Not much fun for playing in the tub, although, she managed to play some with the inch and a half of water and a leg propped up.  There is always a way to manage...we just have to accommodate.


 I came down the stairs last night and Alice was wearing this hat.  She stopped me and said, "I'm Pirate Alice!"  She pretended she had a sword and was going to fight me.  We have been teasing her that she has a Pirate peg leg.
I wanted to toss the cast in the garbage at the doctor's office, but I thought the boys might like to see how it is made, so I brought it home.  When Blair came in from school and saw the cast, he wanted to put it on the porch to scare people on Halloween.  He said it would be spooky.  I think it's more creepy than spooky.  It is no longer on the porch...

Alice's new outfit.  A walking boot. 

It must be the smallest size they make.  It was special ordered.

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