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, November 16, 2012
Happenings at Home
The funny things that happen at home...I love it when the kids are creative and come up with their own games and projects. This time Natalie came up with her own dance. She thought she was so funny. When she showed me the video I laughed plenty. This can be viewed two different ways...either she is just silly or she is bored and needs to be back in school surrounded by peers. I think both might be right. :)
Later Alice joined in, then when Blair came home from school he joined them...it was a ball! By the time Matthew got home the rest of them were too tired to make more dancing videos.
Natalie has been doing awesome with her homework. The goal is to have her caught up with the rest of the class by the time the doctors allow her to return to school. Her teacher Mrs. Nelson who comes to the house three days a week is wonderful and Natalie enjoys the time together.
Tyler and I have been tag teaming the rest of her homework as well as the boys' homework, usually we get this done before the boys go to school in the morning. We seem to fight over that job, because the other job is keeping the two little girls out of the way...which means all the stinky diapers that come with it. Morning seems to be the schedule for stinkers; which in Alice's situation, she has more stinkers than one. Maybe this is more information than desired. However, if we are willing to play dolls and princesses they are as happy as can be.
Lisy
Mattewlina and Jacksonlina...This is what I found when I came down stairs. They ran around laughing, thinking they were the funniest kids around. The princess dresses didn't stay on long, they tired of them quickly...a little snug.
Matthew and his friend Jackson...it's true, they had much more fun being Knights...it's all about fighting and swords.
Mean Knights
Who's Who?
Blair and his friend Tayler.
Alice and Evie all bundled up for a long bike ride with Dad. They had a great time and I had an even greater time. I was able to get many things done while my two shadows were absent.
Natalie wanted me to see her elephants: All in a row!
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