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, January 20, 2013

Hospital Sleep Over With Aunt Amberly

Last night Amberly came to stay with Alice.  She and Alice had a great time.  Aunt Amber always comes prepared.  They did princess puzzles and more.  When I told Alice that Amber was coming she said to me, "You can go now Mom."  I was happy she was so excited and I know she is in good hands.

Alice insists on ordering her own food, wearing her Rapunzel pajamas from Uncle Paul.

Aunt Amber with Alice, and new P.J.s for the sleepover.

Once Amber arrived I headed home, It was nice to be home and snuggle with Evie; and to be with the rest of the family.  At home we stayed up late watching all our old home videos.  The kids loved it.  We have not seen them in a very long time.  It is interesting how we can long for certain memories of the past.  Our children are still young, yet Tyler and I kept saying that we would love to go back in time and enjoy the moment once again.  It also made me miss little Alice.

We anticipated on bringing Alice home this morning, however, the doctors called and would like to keep her for a couple more days.  There is concern regarding her GI system, it is wise to monitor her a little longer at the hospital.

Alice feels discomfort, I'm certain of it, however, she acts as if all is well.  I know it is because she doesn't know any different.  Normal for Alice is unlike normal for most people, her stamina and attitude amazes me.

The kids at home are busy playing, watching home videos and drawing mustaches on each other.  Never a dull moment.  So much for my eyeliner pencil.


1 comment:

  1. Lisy, You and your family always amaze me!!! I love your creativity and love for life. Perhaps the challenges you have faced have given you a greater appreciation and enjoyment for life. Thanks for all your posts and for your inspiration!