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.

Sunday, July 29, 2012

You Can Do It!

Around 4:30 am Alice woke me up as I heard her wimpering in her bed.  I came to her side and asked her what was wrong.  She said, "I need my diaper changed".  I changed her, then she asked if I would scratch her back and scratch her bum.  Yes, it's silly she loves her bum to be scratched too.

Then she looked up at me and said, "hey, we didn't pray".  I then remembered that I was so busy watching the olympics on TV when she fell asleep the night before that we did in fact forget to pray.  "Okay Alice, lets pray right now", I said.  She sat up folded her arms and we prayed. 

Alice then asked if we could read a book, I said to her, "Alice Mom is tired and I need some more sleep,"  She said, "You Can Do It Mom!"  Any time our children say the words 'I Can't Do It', we say to them 'You Can Do It'!  She held her hand in a fist and raised it up when she said, 'You can do it Mom'!  Now, how can I pass on that.  So I found two little books and said to her that when I finish reading them to her she may continue to look at them with the night light on but that I would be going back to bed.  She said to me, "alright, but can you get my puzzles on my bed?" 

She stayed awake for the rest of they day while I dozed in and out until the doctor had to tap me on the shoulder at 9:00 am for rounds. I must have been tired because I don't remember anyone coming in or out of the room.

Alice was able to have water with a tiny bit of apple juice in it. She was super happy to drink.

Lisy

No comments:

Post a Comment