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.

Friday, April 27, 2012

A Better Day

Today was a great day for Natalie.  She was feeling good today and fussed very little regarding the IV.  She ate and drank more.  The doctors held off on all labs until she has the PICC line placed Monday, they understand the trauma it is to draw blood from her.  Her IV is for medication use only and we hope it lasts until Monday.  Overall she was more content to still be at the hospital than I thought she would be.

Tyler brought the children up for a visit as we traded places.  They had a good time, and then once everyone started to get hungry and tired we knew it was time to take them home.  Tyler stayed with Natalie.  I'm looking forward to spending time with Matthew, Blair, Alice and Evie.

Matthew was so anxious for me to get home so I could see the awesome package that arrived.  We had so much fun playing games and doing puzzles, building rubber band propelled planes, and still much more to come.  The boys talked about this package the entire ride home.  Natalie will enjoy it too when see comes home.  Matthew actually brought some of the items to the hospital for her.  Wonderful it was!! Thank you, thank you, thank you!

I thought it would be good for Natalie to start ordering her own food to acquire some phone skills.  I will say that she has improved much.   Talking to someone on the phone was alright...we practiced our Please and Thank you's and May I's.  The more difficult part was to remember what it was she needed to order.  She would get a little nervous and forget.

I caught some of the conversations on video.  One in which she was holding back a cough or something.  I'm not sure what happened with the other conversation...I'm certain she didn't either. :)

Lisy


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