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, February 27, 2012

Day 41 Alice-Day 68 Natalie

What a great day it has been for Alice. She and I have played, giggled, and even took a walk down the hall. Because her counts are high, she was able to slip on a mask and venture out into the hallway.

Today we have seen improvement in her blood pressure, she has eaten better, and her stomach has shown signs of churning. Yeah Alice, you are getting better. Of course she was willing to wear clothes today because that was the stipulation for her being able to go into the hallway.

They stopped the GCSF so her counts will come down a little, but her ANC is still good at 1000. At this point everyday she will make big improvements.

Between keeping her little feet from going under the buggie while I pushed it and having physical therapy come today she is pooped. She cannot yet stand on her own, but she is willing to try and each day she will get stronger.



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Her exciting hallway adventure



Alice has been laughing a lot more lately...I'm not sure exactly what was so funny this time but I grabed my camera just in time to capture some of it. And she does not mind if her oxygen tube is falling out.

Posted by at 2:23 PM

2 comments:

  1. AnonymousFebruary 28, 2012 at 7:37 AM

    So precious! Hooray, Alice! I would be giggling my life away at this point in time--almost home, sweet girl! Blessings to your family. Thank you for sharing with the world. :)

    ReplyDelete
  2. Katie EltonFebruary 28, 2012 at 9:30 AM

    Oh Lisy! This is precious! How fun to see Alice happy and smiling again. I bet that you and Ty are so relieved. Yay for sweet little Alice:)

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