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, April 6, 2012

Alice Came Home Today

Wow, what a day! We are home now and Alice is back to smack. She doesn't slow down for anything. She kept me up very late last night so I figured I would try to catch a little nap once we arrived home. I had no business trying to nap as long as she was around. Her words are ingrained in my mind, "No Mom, don't take a nap...play with me!"

She however, caught some Z's on the way home. She had been so moody while trying to prepare for discharge and gather our things that I knew she was extremely tired. Matthew called as we were leaving the parking garage, I handed the phone to Alice so they could chat. She didn't last past the greeting. She held onto to the phone long enough until I came to a stop light where I could catch a picture of her.



Alice is feeling better, all the tests taken have been negative. She had something that caused the fever, we may never know what it was...we hope she continues to improve.

She had her dressing changed and I was thankful that I didn't have to do it. The nurses do a fine job changing the dressings.

Alice was giving the cleaning lady a thumbs up after she told her how to clean....BOSSY!!



I continue to think back several months ago when we first approached the idea of transplant, the memories are vivid in my mind and I can describe in detail the feelings that accompanied those memories. I feel thankful that we are now on the other end...healing. What a blessing this journey has been for our family.

Lisy


Posted by at 7:52 PM

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