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.

Monday, July 23, 2012

Alice and Natalie together at the Hospital

Yesterday was busy I never had a chance to post.  I will try to catch up on things.  The night before last Alice was having a hard time keeping her heart rate up so they did an echo cardiogram at 3:00 a.m.  Everything was normal...phew!  Yesterday she had large volumes of stool.  It was a hard day for her.  This morning was especially difficult.  The doctors took her completely off liquids and everything in hopes that her stool out put would improve.  Finally by afternoon her body began to 'slow the flow'.  She is receiving her nutrition through IV now.  We hope that we will see even more improvements tomorrow as well. 

When I came into her room today the nurse told me a cute little story.  She said when she walked into Alice's room, Alice motioned to her to come close.  The nurse came close and Alice pulled her closer, until she was in whispering range.  Alice then whispered in her ear, "I want a bottle". 

The nurse (Andi) said it broke her heart.  Later with each new person who entered the room she would ask them for something to eat or drink.  It must be hard for her to understand why nobody is letting her eat.  Yet she is being so patient.  When I laid by her side she stroked my face so gently then said, "Mom, I want something to eat."   I quickly pulled out a game and we played for a while. 

Today Grandmother Fish came to visit and kept her busy for sometime talking about her upcoming birthday...they made some big plans.  Aunt Amberly brought her a darling Rapunzel balloon.

Alice looks much better tonight...what a comforting feeling it is to see her feeling better. 

As for Natalie she decided to join Alice in the hospital.  Last night she had a temperature of 104 degrees.  She was complaining of her ear hurting.  We brought her to clinic and they decided to keep her overnight.  Her ear looks infected.  She had an IV placed and began some IV antibiotics.  Her stay should be short.  She developed a little cough today so we are hoping it won't amount to anything.  Surprisingly she is in good spirits.

I caught a good window with Alice this morning.


Natalie did not want to deal with me this morning, but I had to get her on video.


Posted by at 11:21 PM

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