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, May 28, 2012

-Alice Joins Us at the Hospital--Happy Memorial Day

An interesting day, we made arrangements to have Alice admitted.  She has been running a low grade temperature, but mostly vomiting and diarrhea.  When the doctors came on rounds to see Natalie and heard about the symptoms of Alice they prepared a room for her too.  Natalie is moving rooms today, the two of them will be neighbors.  Natalie loves the rooms with a view of the valley, and even more she she loves the view of the Temple...her new room next Alice's will have the best view. 

We have been decorating the girls' rooms with paper balls and fish decals.  Alice made crowns and glasses for her nurses....it's so cute.  Alice sleeps with her clothes off because she gets hot.  With all the hair on her back and everywhere, she has a permanent sweater.  It's so funny...she even has a swirl of hair on her back, I will post a picture of it.  It's all temporary, but in the meantime we are having fun with it.  The cyclosporine medication makes them grow hair all over.  Once they come off that med it will gradually fall out.

Still running plenty of tests on Natalie...wondering what might be going on with her.  She is more sick than Alice.  She is being a good sport, yet tired.

Lisy

Just checking in

View from the rooms

Some of the decor we put up

Natalie and Dad
Posted by at 11:30 PM

1 comment:

  1. BarbieMay 31, 2012 at 1:03 AM

    Hi, this is Barbie Patterson, McKenzies mom. She sent me the link to your blog. She has talked about you for some time but I never put two and two together and realized that you were the Fish family and I had actually been following your story for quite sometime. Small world. My heart goes out to you and your family at this time as you take on this experience with your two little girls. No one can quite understand all that you are going through without having been there. Although it has been 11 ears since our experience as I read through your blog posts they take me back as if it were yesterday...........I feel your frustration, your worry, and your hope.......I forgot how much I loved little bald heads! I really enjoyed looking at your posts about the Doctors and nurses. So many that I know and love. Tell me, does Irish no longer have his pony tail? Would you please tell Irish, Andy, Shannon, Kathy (from Boston),Rick, Dr Pulsipher and Hilary all hello for me. The staff make the time spent there bearable.They are the best. They become family. I am sure you have come to realize this. I have a feeling we will be meeting soon as Josh and McKenzie come home and start to make all of their future plans! He seems great and we look forward to finally meeting him. He sure makes McKenzie happy. My prayers are with you and your family and your sweet little girls.

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