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, May 27, 2012

Natalie's a Trooper

Today has not been much different than yesterday, they ran more tests.  They drew labs for Epstein Barr, and another virus.  She had more scans done on her tummy/pelvis and sinuses.  Natalie had to drink a large volume of orange fluid for the CT scan contrast.  That was a challenge.  It would have been hard for me.  She hated every minute of it, but did it anyway. 

We should hear more tomorrow regarding results. 

It seems as though she is experiencing severe tummy trouble, most likely due to gas and possibly a bacteria in her gut.  The fevers could be associated with an intestinal bacteria, but could also indicate other things.

Natalie was happy today to see the family.  Tyler brought the kids and they had fun.  Once Natalie's lunch was delivered everyone started to complain they were hungry so Tyler packed up the kids and headed home.  When everyone is here, it's like a time bomb--the rooms are a little too small for our crowd.  Amber came with to visit and helped Tyler with the kids.  Grandpa and Grandmother Fish came to visit later.

She fell asleep early evening and has been asleep since...she is exhausted, and needs some rest after last night. 

CT Scan

Taking a Break From Playing Headbandz to Order Breakfast

Everyone...testing the beds hydraulics


1 comment:

  1. I pray you get answers in the morning! Your family continues to amaze me! Sending lots of love and prayers from our family to yours!