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, November 20, 2012

Alice Comes Home--Natalie Has Clinic

Yesterday Alice came home--our fastest hospital stay ever--one night.  She was given her medications by IV while whatever she was dealing with passed.  She must have had a stomach bug.  We are happy Alice wasn't having GVHD. When I came home from the hospital the Elementary School called me to inform me that Matthew wasn't feeling well and would like to come home.  He came straight in and went to bed with a pink bucket.  He spent the evening hovering over the bucket.  I haven't seen Matthew so wiped out in a long time.

They must have had the same thing.  By the next morning Matthew was back to smack and feeling good.  He wanted to get to school so he wouldn't miss his spelling test....I never felt that way about my spelling tests when I was in Elementary School.

While in the hospital Alice received IVIG.  This will help her remain strong.  At some point we hope Alice will be able to provide productive antibodies of her own.

Natalie had her best day in Clinic ever!  This is huge news.  Not only were her counts great but she beat me in seven out of eight UNO games.  I finally captured her celebrating one of her many wins.  I was very glad she had a good day...as she always gives us fits about going to clinic.  Thankfully her labs were accomplished by only a finger poke.  Next time (in Four weeks) she will require a needle stick.  We better gear up now.

Natalie no longer needs Spetra (an antibiotic).  Another med off the list.  Natalie has had a handful of more seizing episodes.  Her medication needs to be adjusted possibly.

Lisy

A new room and a new challenge, we had races getting the magnets to the top.

Collecting goodies for her new club with Matthew and Blair...Alice and Evie haven't really been invited to the club--they don't follow the rules.

Making a paper Turkey






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