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.

Saturday, July 28, 2012

No Big Changes

Alice was able to have water today...she normally loves to drink water, but refuses to drink much because it isn't apple juice. She wants something more. I was able to spend the night at home last night and enjoyed being with the kids and Tyler. It was fun to come back and be with Alice.   I love being with her. She asked me today if she could have dinner. Then she said, "I want lunch," then she said, "I want breakfast", hoping one of those meals would find her a yes answer.

I wish so badly I could give her everything she wants. Soon...hopefully soon!!

I am amazed at how patient she is--yes, she still has melt downs and she deserves too. Fortunately, she is easily distracted from her problems with games, books, movies, and such.

I said to her, "why do I love you so much?" Normally when I ask my children that question they say, "because I'm yours"...this time Alice said, "because I'm smart." She always makes me chuckle.

Lisy

Wearing some new sparkly clips, Because her hair is long enough.

Still enjoying the castle.


Natalie was invited to the Homestead to be a part of the Smith's golf tournement for Primary Childrens.  Great day, lots of fun.  I love the Homestead...I have a lot of memories of being there as a kid.  It is beautiful.

Pals

Matthew and Blair had a great day.

Evie didn't have as much fun as the rest of us.  Although, she loved playing on the grass, but once it was past her nap time she was cranky...and the fact that she found some random Moutain Dew on the ground and started drinking it didn't help any.  Later Blair told me that he really likes the yellow drink Mountain Dew.  I'm now wondering if Evie was drinking Blair's drink (who else would put a drink on the floor).  And how did Blair get a hold of a Mountain Dew anyway?

The Homestead was a great place to spend a day together.

Last Sunday we went to visit Alice as a family, we weren't going to be home by the time the young men came to bring the sacrament to the house so Matthew left them a note on the porch.  We are very appreciative of the young men who come each Sunday to bring the sacrament to our family.

Posted by at 11:40 PM

2 comments:

  1. Allyson MorrisAugust 1, 2012 at 12:31 AM

    So many good memories at the homestead pools! Such easy fun times. Love you guys.

    ReplyDelete
  2. Sara LouAugust 19, 2012 at 2:56 PM

    That's a great picture of you and Tyler, Lisy! So glad we have this blog to keep posted on Alice and Natalie's progress...they sure are amazing and inspirational.

    ReplyDelete

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