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, April 28, 2012

Still at the Hospital

Natalie's nasal swab indicated that the adenovirus is gone but now she is posivitive for rhinoviurs.  Both very common virses.  

Natalie is just hanging out in her hospital room, waiting to come home.  She is still scheduled to receive a central line (most likely a PICC) on Monday.  Today Tyler was with her and then Amberly came later.  I will go in the afternoon tomorrow and stay to bring her home Monday (hopefully).  Being that it was Saturday and Natalie is well, and has not had any labs pending, the doctors didn't need to stop by.  It has been nice not having pumps beeping day and night and all kinds of meds around the clock.  It's been a low key stay...which means her condition is good.  Our transplant stay with the girls was hectic day and night for weeks on end.  This seems so strange to us...even at home.  This past week has felt lonely at home without Natalie.  It makes us wonder how in the world we did this for months...it's only been a week this time.

The boys had fun today working on many projects...Alice and Evie were glad to have Mom back.

Thanks everyone for your support!

Lisy

Posted by at 10:13 PM

1 comment:

  1. UnknownApril 29, 2012 at 8:49 AM

    Praying Natalie will get to go home very soon! Stay strong.

    xo,
    Allison

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