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.

Thursday, May 24, 2012

Still Wondering What Natalie Might Have

Today didn't bring much for news.  Natalie has been uncomfortable most of the day according to Tyler.  She had a chest x-ray, which didn't indicate much...although she has the symptoms of pneumonia.  Sometimes the x-rays lag behind real time.  Hopefully this isn't something that has to get worse before it gets better.

We asked to run a urine was negative.  The nasal swab did not indicate anything respiratory.  The blood cultures will take another day or so to grow anything if in fact there is something growing.

She has continued to spike a fever throughout the day.  It's hard when you know something isn't quite right, but aren't able to pin point it immediately.  Not always is the source of the fever discovered.

I will be heading up in the morning to trade Tyler places.  She has plans to Skype with her school class in the morning.  Something fun to look forward too.  She mailed her teacher a letter last week asking to Skype, she said she missed her friends and wished to go back to school.  Her class sent some darling cards of love and encouragement a couple weeks ago.  It was awesome.

I noticed on Sunday when we sat outside watching the solar eclipse Natalie was watching another girl in the neighborhood her same age hoping she would make conversation with her.  It was cute, and I can't wait for her to be with lots of other kids again.

Today has been strange for me, I haven't been able to accomplish much as my mind has been on Natalie and her situation.  I did fly a kite with Alice and Evie.  They laughed and laughed.  Alice kept saying, "kite you can do can do it!"  The wind was hard to come by today....unlike other days.  But we had just enough to have a great time.  Mostly I was holding Alice in my arms running while she held the kite string.  She was too tired to run herself, but after 30 minutes I was too tired to stand.  Alice, Evie, and myself afterward were exhausted.  When we came in the house they fussed and became clingy to me, so I fed them a yummy soup, changed their diapers and put them in bed.  They fell asleep instantly. 

Phew, a moment to think, I plopped down on the couch and reviewed my day, that so quickly passed.  Yes, this time in our life is exhausting but I will always treasure it.  I love holding two little girls in my arms at the same time, Alice and Evie....two babies, as Alice would say.  It's like I have two little shadows, everywhere I go they follow and if I change directions they turn around and continue to follow...and on and on.  If I am in the same room as them, they are happy, the very moment I leave they notice and follow after me.  Who needs GPS just get a couple little ones, they are excellent at keeping track of one's location. 

We have had so much help during this time...I could not list all the ways we have received help, there are too many.  Thank you to all of you who have helped carry our load.  It has made all the difference.


1 comment:

  1. Fish Family,

    We are thinking lots about you and appreciate your updates on the blog during this crazy time. We love you so much!!!

    Farnsworth Family