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, May 21, 2012

Clinic, Day 152 for Natalie, Day 125 for Alice

Catch-up!  I have set the date on this post for Monday the 21st so I can keep my records straight.  It was a long day in clinic.  Thank you to Dad Fish for taking the first shift in babysitting and Mom Schellenberg for taking the afternoon shift.  Some days are just longer than others. 

Alice received IVIG...which takes a good part of the day to infuse.  With the IVIG she will be protected from more sickness.  Natalie did not require IVIG, instead she spent the afternoon seeing the ENT.  She will be having her ear tubes removed.  Once the ear drum is completely healed she will have one final hearing test.  It will be nice to have a better picture of what her situation might be after the tubes are removed, allowing a better analysis for hearing aids and such.

Counts were well enough for both girls: Natalie's ANC 1700 and Alice's ANC 800.  Alice's chimerism is still pending.  We are anxious to know which direction it is going.

Natalie is still having some trouble with constipation.  It's been hard for her system to find a rhythm since her last hospital stay with the Broviac infection.

Today I was playing dolls with Alice and could hardly keep myself awake, I somehow snoozed off without realizing it...moments later I heard Alice asking me something.  I was half awake and vaguely heard her say, "Do you want a booger?"   I said yes just to answer her, but I had not registered what she said.  The next thing I knew she had put her booger in my mouth.  Needless to say I was wide awake from then on, and will be more careful regarding what I say 'Yes' to.

Thanks again for the many prayers and encouragement in our behalf.

Lisy
Posted by at 8:40 PM

2 comments:

  1. Jill HeapsMay 24, 2012 at 12:13 PM

    Alice know just how to keep mom awake! Thanks for the great laugh :) Keep up the good work girls and have Natalie eat lots of watermelon...that seems to work at our house :)

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  2. MindyMay 25, 2012 at 1:28 PM

    Lisy, Lisy, you are too funny. This post made me laugh out loud. It's so good you write those kind of stories down, so you can remember them. Little Alice sounds like such a cute girl.

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