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, April 9, 2012

Clinic (Day 110-Natalie and Day 83-Alice)

Another day in clinic. Things actually went very smooth. We woke an extra hour earlier than normal to ensure that we would be on time and not forget a thing. We did it! We surprised ourselves because last night was a challenge. Natalie was up a good portion of the night with a pain in her shoulder muscle, she complained that it was difficult to breath in because it would hurt her shoulder. She was running slightly warm, not enough to fuss over. Evie became restless as Natalie was in our bed with pain. Eventually by 4 am everyone became tired enough that we fell asleep despite the discomfort.

Natalie's labs were great. Still running slightly warm (not an official fever), we will be watching her closely. Her ANC is 4600. She has some congestion so they did a nasal swab on her, she was so upset about the swab she vomited shortly after. Her dressing change was still hard, but could have been worse. She had a CT scan done on her lungs...she did well holding still. All the uncomfortable things that happened in clinic today were quickly forgotten when the doctor said she could grab a hamburger for lunch. Hooray!!


Yummy!!



Natalie in CT scan.




Just waiting for Natalie's scan and admiring all the art on the walls.

Alice's counts were great at 1600. She seems to be feeling much better than last week. Alice noticed something in the garden as we were leaving. The kids just finished watching The Gnome-Mobile over the weekend so we got a picture of them with this little man.

Posted by at 9:44 PM

2 comments:

  1. Katie In NJApril 10, 2012 at 12:28 PM

    Yay! Yay! Natalie got to have a hamburger!! :)

    You are all just amazing!

    Kathy Ingwerson, New Jersey

    ReplyDelete
  2. AshleeApril 13, 2012 at 1:37 AM

    We were there this week for a couple of days with my daughter and now I recognize all of this stuff in these pictures. I couldn't help think of your family while we were there. It was a scary thing for me and yet what you have gone through is 10 times worse. What a great place to be though if you've gotta be sick.

    ReplyDelete

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