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.

Thursday, February 14, 2013

Happy Valentine's Day--Progression 2 Diet--Happy Birthday--More Blood

What a fun Valentine's day it has been.  Alice was given a shoe box covered in aluminium foil, filled with decorating supplies.  She had a great time decorating her box, then throughout the day different staff members would deliver Valentines.  Her box was full!!  She would sort through each Valentine and show them off all day.  

Alice's diet was advanced to a progression 2 diet.  She is able to have a little more.  The steamed rice with butter was well accepted.  She wants to eat non-stop.  Her tummy seemed very extended after eating, so maybe she needs to pace herself.

Alice received more blood today, her red cells dropped again.  Tomorrow she is scheduled for a bone marrow biopsy...results will not be back until Tuesday.

I gave her a long relaxing bath and a pedicure.  Alice was happy to feel so good...foot and head massages are the best!


p.s. Thank you to all those who made Tyler's birthday so wonderful and for a great Valentine's day.

Enjoying the Valentines

A visit from Kevin

Eggs...yummy!  She requested gluten free eggs.

A special Valentine delivery from Grandmother.
I wanted to surprise Tyler today because it is his birthday.  I had arranged to have someone stay at the hospital with Alice so I could sneak home early and see Tyler on his birthday.  He apparently had the same idea and arranged someone to stay with the kids at home so he could see me at the hospital.  Luckily we did not cross in transit and he beat me to the surprise, so we decided to have lunch in the city and it was wonderful.  We needed that time to be carefree and together, knowing all our children were taken care of.
It was the best Date!

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