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, October 25, 2013

More Hair Loss, Day 8

Luckily today was less eventful than yesterday.  We managed to finish all three mouth cares; Mary, our sweet nurse got in there and made it happen, and yet was so gentle and sweet--we even bathed Alice, she was feeling well enough.  Her PICC line dressing needed to be changed, she did quite well.

Alice and I watched many of our home videos of her as a baby.  She really enjoyed watching them.  She would laugh and ask to play them again.  She even expressed frustration as the boys would tease in the video.  I could see that she was in to them, and fascinated by them.  It made me happy to see her smiling face.  She was a smiley baby, always animated.  Oh the memories!

Her hair has turned into a giant mess.  She won't let me brush it or cut out the dreadlocks that have accumulated.  Once the hair falls out it tangles with the hair still connected and creates a big snarl.  The picture below portrays exactly what I just explained.  Underneath and along the sides are large bald spots.

I have been so content to be here with her.  I love every minute beside her.  She was so cute today when the physical therapist came; she talked more than I had expected.  She even walked around the room, which was on my goal list for her today.  I wasn't sure if she would be feeling well enough, but she did it and was fine.  I am so proud of her.

Good news, her weight has come back down...she was holding a lot of fluid.  In the past day she has lost a pound of fluid.  Her blood pressure has improved.  We are happy.

Lisy

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