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, July 9, 2012

Great Day in Clinic

Day 201--Natalie, Day 174--Alice

Only good news today..Hooray!  Natalie and Alice are doing great.  Counts are good.  Natalie's ANC is 2500, Alice's is 3400.  All other labs are stable.  The doctor said Natalie can stop her nightly fluids.  If she can drink enough during the day she will be able to stay off the fluids and soon will have her line removed.  Alice's fluids were cut in half.  She will be able to stop them once she is done with the Cyclosporine (in 3-4 weeks).

Day 194 (July 2)--Natalie finished tapering her Cyclosporine.  Day 200--Last Mag fluid.

We hope for a good week.

I love Smith's Marketplace...they have the biggest gluten free food selection I have found yet. I also love all the great pointers many of you have shared.  We actually found a bread Natalie likes.  It is in the health food freezer section at Smiths.  We are making progress each day.  I was telling Tyler that I feel more healthy...then realized that I am eating healthier along with Natalie. 

Lisy

I found my camera :)  I added pictures to some previous posts.


                                      Another favorite icon at the hospital...The Painted Horse.


Posted by at 11:00 PM

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