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, July 26, 2012

Quick update

Just a quick update on Alice. She was doing well enough this morning to go back on a clear liquid diet, however it did not last long as her stomach sent everything through immediately. By the afternoon the doctors had no choice but to return her to being NPO. It is a struggle for me to decline her request for an apple juice bottle, especially after she was able to have one hours before. I did my best to cheer her up. I was finally able to console her with Lisy's make-up bag. I handed her whatever she wanted, and she had at it for an hour coloring her face. I hope there is something left for Lisy when she needs it. We will look for a better day tomorrow.

Alice's line broke today as I picked her up from the chair, the tubes were caught.  This will be the second repair on the same yellow lumen.  Thanks Mitch for doing a great job.  Now we are back to only one clamp on the line.

Having an apple juice bottle earlier in the day with Evie.


Tyler
Posted by at 10:41 PM

3 comments:

  1. Jill HeapsJuly 27, 2012 at 8:16 AM

    Prayers...prayers and MORE PRAYERS :)

    ReplyDelete
  2. GallowaysJuly 27, 2012 at 4:54 PM

    Poor Girl! If the make-up distracts her from eating I am sure Lisy will gladly give it up :) Our family continues to pray for your family and will be praying extra for Alice right now. Hope they can help her get back on foods (or even just liquids) soon!

    ReplyDelete
  3. KelleyJuly 28, 2012 at 11:04 PM

    So glad to get updates on you all. Sending love & prayers from all of us.

    ReplyDelete

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