The plan for the day is to take Jackson off iv fluids and watch his temp and breathing. If it all goes well we will get to go home maybe by dinner time. I am so looking forward to decorating a Christmas tree this weekend with all my kids at home.
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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Friday, December 10, 2010
Home sweet Home
Jackson had a good night no high temps and normal breathing. In the new hospital all the rooms have windows into the room. I know it sounds weird but it has its positive side too. The windows are good for the kiddos that don't have any one staying with them. It is really sad that a child could be sick and alone in a strange place but people do it everyday. The curtains for the windows have not been installed yet and it feels a little creepy having people walking by looking in. the nurse we had last night made Jackson a curtain. It's not fancy but it gets to job done.
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