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.

Monday, October 28, 2013

Day 11

When I came up last night Alice was disappointed. She wanted her Aunt Amberly to stay and play games. She was also thinking her mother was coming up too, so that didn't help my popularity either. The night was filled with pump alarms and waiting beside until Alice fell asleep. She needed a healthy dose of her morphine last night to help her get comfortable. This morning I woke before her and found her mouth was caked with blood. I didn't want to wake her because she may have just fallen asleep. It looks bad, but I wanted those of you who have followed our girl's progress for so long to be able to see more of what she is going through. Times are tough for her, but she is still able to giggle with her mouth closed when her Dad sings along with the "Little Mermaid's, "Part of Your World." No, I do not plan on getting footage of that:)

More Platelets today.

                       Keep and eye on the Ladybug at the top of Alice's Pillow.

1 comment:

  1. Sweet Alice, Prayers for better days ahead. She is such a trooper and inspires us with her strength, grace and fight.