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.

Friday, March 30, 2012

DAY 100--NATALIE





Today was a GOOD DAY!!

Hooray for Natalie--Today is Day plus 100! We can't believe that it has been 100 days since Natalie's transplant. We never did post her Transplant Birthday Video, so in memory of her Transplant here is the video.

The second video is of Blair shortly after he left the operating room, he had told us moments before we took this video that if he wanted a drink he would give us a thumbs up and a thumbs down if he didn't want anything. And to clarify, McKay is his cousin.

Originally when we spoke with the dietitian about the girls diet, the general rule is that by 100 days they can come off the low microbial diet. This means they can have restaurant food etc. Still they need to be careful and that which they do eat from restaurants must be freshly made.

Natalie has known that 100 days is a milestone, and so she has been counting down. In her mind we were going to celebrate by going through the Wendy's drive-thru. I warned her that we needed to double check with the doctors before we did so. I called them, left a message, and the next 30 minutes she waited by the phone. When the BMT clinic returned our call they asked what the question or concern was...I was happy to say we were not calling to report a fever, just a request for a hamburger.

The answer was not yet. Oh how upset Natalie was. She stormed off to her room and griped about how mad she was that it's finally 100 days and she still can't eat what she wants. I tired to explain to her that a homemade burger is much better. The truth is when you know you can't have something it almost makes you want it more. We hardly eat out anyway, however, maybe that is why it seems like such an exciting thing to begin with.

We decided to celebrate by getting a movie from Redbox. We watched The Adventures of TinTin, and Natalie really liked it. We did some art with colored pencils, that can be changed to water colors. The boys made the number 100 out of play dough for Natalie. Natalie also was able to spend time with Grandmother Fish putting together some things for Easter. She ended up having a much better day than she had suspected in the end.






Today was a great day for all of us.

Lisy

We are looking forward to watching conference together!
Posted by at 11:47 PM

1 comment:

  1. StephanieMarch 31, 2012 at 1:40 PM

    Oh, so sorry she was disappointed about Wendy's.
    (I remember our then-3-year-old once crying after coming home from the drive thru there because she thought we were actually going to visit someone named Wendy and have dinner at her house)

    Glad she still had a good day then anyway!

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