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.

Wednesday, August 1, 2012

Munching Alice

Alice has been here two weeks today.  In a way it seems as though it has been longer than two weeks, thankfully she has made huge improvements over the past couple days.  She is now on a progression two diet.  She has an appetite of a bear due to the steroids she is on.  She will drink up to 3 liters a day in watery apple juice and she eats and eats.  We hope her diapers will have more substance to them with her increased diet. 

The steroids create quite the emotional roller coaster.  It has been a challenge for Alice to control her emotions as she is on a high dose of steroid.  It would be hard for a small child to understand why they feel frusterated and such.

I was home with the other children for the past two days, so when I came today to be with Alice I was surprised to see how much she has changed.  I think she has gained almost 5 pounds in two days.  It was a wonderful thing to see her eating to her hearts content.

I showed Alice a picture of Evie today and she said, "Ahh...I lost my Evie!"  I know she misses being with her siblings.  Natalie asks often about Alice and calls her many times to talk.  The boys miss her too, however, they have been busy making booby traps for the bad guys.  They had taken yarn and made a cob web like trap in their room.  Sometime later I could hear Evie crying.  I went to folllow where the crying was coming from and there she was all tangled in the boys' booby trap.  I told Blair and Matthew to come quickly because they just caught the bad guy. 

Blair then decided that his bad guy trap wasn't all that practical so he said, "Ahhh...I have a better plan".  He and Matthew worked again for some time until the new plan was ready.  They then demostated to me the new plan.  Blair walked into the yarn, which was tied to the sink, causing the tension to pull the sink handle forward to make the water run.  He said, "Now when I get up in the morning it will be easier to brush my teeth, because the water will already be on."  You're right Blair, maybe this will help motivate you to brush your teeth...was my thought.

Here is a great quote.
       "What lies behind us and what lies before us are tiny matters compared to what lies within us."
                  --Ralph Waldo Emerson


This is the face she had when her food arrived.

A lot of food for a little girl!!
  We love the people in food service, they searched the hospital for the last three purple popsicles...they know what Alice loves.

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