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, February 4, 2013

Apple Juice Bottle

A better day.  This morning Alice was placed on a clear liquid diet.  Yeah!  She smiled so big when we told her she could have a watery apple juice bottle.  It has made all the difference, just enough to take the edge off; she did indeed have a better day. Alice made Valentines for many of the nurses...then made one for herself that she is protecting very carefully.  I was instructed that mine is a secret and I can't open it until Valentine's Day.

Alice and I took a nap together today...it was long!!!  It was awesome!  The sun was shining in the window making it warm and cozy and we slept for almost 4 hours during the middle of the day...really who gets to do that.  It's not so bad here at the hospital ;)


When we Skyped home Natalie and Alice played Hide n' Seek.  Natalie would hide and Tyler was walking around the house with the camera as if Alice were there looking for her.  It was fun for all of us.  While on Skype Matthew and Natalie showed me the wonderful art work they created and Blair danced like an Egyptian, trying to entertain Alice.

A few days ago Alice's Cyclosporine (anti-rejection med) level was 17 (extremely low) it should be 250.  The doctors were very concerned; we concluded that it was because her body couldn't absorb the medication, including nutrition because her GI system was so poor.  Her body needs to heal so we can sort out all the other things going on with her.  We are just putting out one fire at a time...the hottest ones first.

Alice started Valacyclovir today to help with her mouth sores...maybe tomorrow we will see some improvement.

At home, Natalie is recovering nicely from the Shingles.  She continues to complain less each day about the itching and pain.

Lisy


The long awaited apple juice bottle
Making a bead necklace
Very nice necklace

This is what we look like after a 4 hour nap.  She did wake smiling.  

A good nap calls for a good hairstyle in front of the mirror




Grandpa and Grandmother Fish saying hello, Alice being silly.

Mom's cousin Kristy came to say hello.  

Making Valentine's











Posted by at 11:30 PM

2 comments:

  1. TeresaFebruary 5, 2013 at 10:11 AM

    Lisy,
    So sorry to hear she's back in the hospital. Please let me know if we can help in anyway. It looks like it was a better day, I love her curly hair! Take care. Lots of love and prayers your way.
    Teresa Adams

    ReplyDelete
  2. Lisa JackFebruary 5, 2013 at 10:56 PM

    Love that she was able to have some "apple juice" lol. I do the same with my kids. We are such bad mommas. ;-) praying each fire put out brings more & more relief & good news. Glad to read the shingles are improving, poor girl!

    ReplyDelete

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