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, December 7, 2011

Alice's turn for testing

Today wasn't too long, Alice had a 2 hour Neuropsych evaluation...she thought it was the greatest thing ever to play with blocks and toys.  Alice did fabulous, mostly due to the fact that she loves the attention and enjoys showing off.  Later she had some labs, an Echo, and EKG.  Tomorrow we have a day off...HOORAY!  Friday is the final day for Alice's tests, in which Monday she is scheduled to be admitted and have her broviac line placed.  There is a high possibility that her schedule will be somewhat delayed as well.  There are a few things we are waiting on from the donor's end.

Natalie is doing better today, the nurse came to the house and changed her dressing.  Tyler and I were not there, but Grandma Schellenberg said it was a bit traumatic.  She is still very sensitive; in fact she still has the hospital gown on from yesterday.  She is worried to change because of the movement bothers her line.  It will become less tender with time.  We will find out more soon regarding her lungs.  Some blood tests were done for her lungs yesterday, and they tested Tyler and I for TB because they didn't have the heart to poke Natalie anymore.  If our tests are negative, then hers would be as well.  We hope they will not need a biopsy of her lung, but there is a chance it will be necessary.  Friday will bring more vital information.

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