This blog is about Jackson Culley. It is about his life with Leigh's, a mitochondrial disease. It is about how we, as a family, work through the everyday life stuff and cope with his terminal illness. Why call the blog The Freckled Toe? I call it that in honor of Jackson. He has a dark brown freckle smack dab on his right big toe!
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Thursday, December 9, 2010
Big dreams crash
Jackson's temp started rising at about 1:00 again. It went from 99.5 (2:00pm), 99.8 (4:00) gave motrin and now it is 99.4(6:00pm). I thought if his temp stayed down through out the day we might could go home Fri afternoon. I never should have let that thought cross my mind. Jackson has spent most of the day sleeping. He watched Sesame Street from 9-10. After it was over he was tired and slept from 10-1. He was awake for respitory therapy and suction. He went back to sleep from 4-5:30. He is tired. We are just waiting on the germs to move out.
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