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.

Tuesday, July 24, 2012

A Better Day for Both Girls--Happy Pioneer Day

Both Natalie and Alice have improved much today.  Natalie has not had any fevers since she came yesterday.  Her lung x-ray looks great.  Since she started on IV antibiotics her cough has improved as well as her ear.  Tyler and I feel like we caught an infection in the making.  We are glad we only had to see the beginning phase.  At some point in her future we will let her body prove itself and see how she can manage with out hospitalization.

Today Natalie moved rooms to be next door to Alice...both girls have the larger rooms.  It's a bit nicer for space.  They also have a view of the city.  Natalie was so cute as she Skyped with Alice.  Alice had taken a five hour nap, and all the while Natalie was patiently waiting to Skype with her.  Natalie said that she wished she could just see her in person.

We celebrated Pioneer Day by me reading a pioneer story to Natalie...unfortunately it put her to sleep before I could get to the best part.  Alice and I celebrated by watching some amazing fireworks from her window.--there must be a grand celebration at the Franklin Covey Field or somewhere near there.  Alice would call out each color of the fireworks.  She loved it.

I think she has asked no less than 100 times for a bottle.  She at one point was pretending she was eating something.  I asked her if it was good and she said yes.  The only way I am able to ease her requests of food is to scratch her back and head.  The last time she had anything solid was seven days ago, and absolutely nothing starting two days ago.  Hopefully by Thursday she can start on clear liquids again.  We are thankful for IV nutrition in the meantime.

Alice's ANC has dropped again, but she has been responding favorably to the steroids.  Also we learned today that her chimerism is actually in the 60 percentile rather than 40 percentile.  The misinformation was happily welcomed, although we have some climbing to still do, we are happy it is higher than we had thought.

Tyler is home with Matthew, Blair and Evie.  When the nurse asked me which room I would be sleeping in, I smiled and said which ever one is more quiet.

Lisy
Posted by at 11:49 PM

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