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.

Wednesday, November 6, 2013

PICC Removed, Day 20, Record High ANC 4900

Alice  continues to improve.

Record High ANC of 4900!!  Hemoglobin 9.9, Platelets 43.  Her counts keep climbing.  It really is strange to us that she hasn't needed infusions of red cells and platelets more often.  Her last infusion was several days ago.

Her PICC line was removed...they no longer need it.  Each day it seems as though another med is cut.  Her care is manageable with just two lines now.

She tried a bit of jello last night...at least she put the spoon to her mouth, and touched the jello with her tongue.  Baby steps are the key.  We don't want to rush her.  Nausea is still a constant thing.  She struggled with keeping water down today.

When I saw her again today after being at home, I couldn't believe how much better she looked.  Each day she makes improvements.

Lisy


PICC lines can be removed by a nurse at the bedside...no sedation required. She did alright, never easy to remove the stitches.

Bruises from the PICC line

Alice took this picture, after her hard work.

She wanted me to take a picture of her funny face...well this is it--an attempt to go crossed eyed.





Posted by at 11:30 PM

2 comments:

  1. Jill HeapsNovember 7, 2013 at 8:22 AM

    YIPEE!!! I am loving this good news and yes, she is looking soooo much better!! I am so happy for you guys!!

    ReplyDelete
  2. KateNovember 7, 2013 at 6:55 PM

    WONDERFUL, so happy to hear the good news about your sweet girl!

    ReplyDelete

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