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.

Sunday, February 3, 2013

NPO for Alice

Yesterday morning the doctors ordered Alice to be NPO (no food or drink--nothing by mouth).  Of course she was not happy about that.  Shortly thereafter, they started her on TPN (IV nutrition).  She has been very hungry and sad, yet willing enough.  The sores in her mouth seem to be getting worse.  Still she is so cute.

Aunt Amber decorated her room for Valentine's Day.  It is very cute and fun, and has brought back many memories of this time last year.

Maybe tomorrow we will learn more about her situation.  When I arrived to see her today I learned that her diarrhea has slowed.  This is great....we hope this means she does not have graft vs. host.

Lisy


Great Visitors--Uncle Shane and Aunt Louise, Grandma and Grandpa Schellenberg, Uncle Josh and Aunt McKenzie


Josh and McKenzie.  We couldn't tell why Alice was upset.  Maybe she didn't want them to leave...who knows.
Lisy
Posted by at 11:00 PM

4 comments:

  1. Jill HeapsFebruary 4, 2013 at 7:57 AM

    I just want to grab Alice and hug her! That sweet sweet girl is going through soooo much! "This to shall pass" :) I keep praying that Dr. Pulsipher will talk with the right docs and ask the right questions and FIND the RIGHT answers! We are cheering for you!!

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  2. MindyFebruary 4, 2013 at 3:48 PM

    You are Amazing Lisy! So positive through everything. I love Alice's hair! Her curl is Awesome. I think of you guys often, I hope Alice gets better real soon!

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  3. Lisa JackFebruary 4, 2013 at 9:30 PM

    What a sweet trooper. Praying for her!

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  4. Krista LynFebruary 4, 2013 at 11:18 PM

    I hate mouth sores! Hoping she can use oral numbing stuff or something.

    ReplyDelete

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