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 6, 2012
Alice has had a rough go of it this morning. She awoke around 7:30 and has been vomiting ever since. She is exhausted now and has fallen asleep. I hope that she will feel a little better when she wakes up. The doctors came in with news this morning that her white cell count is up to 500, but her ANC count is still 0. Should be any day now that the ANC will start to register a count in the upward direction.
Two nights ago I solved my first Rubik's cube. Took me a month; I know.... its pathetic, but I'm in a special club now. It's the " I'm 34 and had to use a youtube tutorial because I couldn't figure it out for myself club."
Hang in there sweet girls! You have come so far! You are both so sweet! How blessed you are to have each other. Still sending well thoughts and prayers your way. Lots of love and big hugs!
Tyler, I consider myself a pretty smart person, and I love puzzles, but I've never done more than one or two turns of a Rubik's cube without giving up. So I'm impressed that you are in the club. Maybe one day I'll try again to join your ranks. I love that, even though you report that Alice is miserable, she always looks so happy to be with her big sister.
Hang in there sweet girls! You have come so far! You are both so sweet! How blessed you are to have each other. Still sending well thoughts and prayers your way. Lots of love and big hugs!
ReplyDeleteTyler, I consider myself a pretty smart person, and I love puzzles, but I've never done more than one or two turns of a Rubik's cube without giving up. So I'm impressed that you are in the club. Maybe one day I'll try again to join your ranks. I love that, even though you report that Alice is miserable, she always looks so happy to be with her big sister.
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