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 15, 2012

Back to the Hospital

Tyler and I came back around 7:00 pm to the hospital, after spending the night with Matthew and Blair. It was so good to see them. They enjoyed having us home as they have been a little homesick for mom and dad.

It was great to see that both Natalie and Alice had a good day for the most part. Today Natalie's ANC dropped to 500. Once again, this is normal when taken off the bone marrow medicine. She received more red blood cells today. It seemed to go well. Natalie had a difficult time later in the evening with her stomach again.

Alice just cooperates so well--she will even return Natalie's iPad to her when she asks for it back. After sometime of Natalie using her iPad, Alice began to ask for "Natalie's Pad Pad", I dialed Natalie's room number and gave Alice the phone. She asked Natalie if she could have her iPad, so Tyler delivered the iPad to Alice's room--I wish I would have recorded her reaction. She giggled and cheered to see the iPad, then she thanked Natalie on the phone and began to surf the iPad for her favorite apps.
That little piece of technology has been quite a blessing. The trick will be convincing Alice when we are home that a two year old does not in fact need an iPad.

Lisy
Posted by at 1:03 AM

2 comments:

  1. AnnaJanuary 15, 2012 at 3:31 PM

    My trick has been convincing Nate that HE doesn't need an iPad. I love hearing your stories. It was wonderful to see and talk to Natalie today. Caroline tells me that Natalie plans on spraying silly string on her nurse next. She's very interested in Natalie's pranks. Thanks so much for keeping us in the loop.

    ReplyDelete
  2. AnnaJanuary 15, 2012 at 7:39 PM

    Hey, Natalie, Caroline and I decided to make a video for you. Anna is the one recording and it is our second try. None of us are professionals, but I hope it makes you laugh a little. It makes me laugh a lot...

    Your mom might have to copy and paste this url:

    http://youtu.be/mTyWGDg6uCg

    We love you and miss you!

    ReplyDelete

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