I just finished reading a book, "Dr. Guilt?" (about many families from Oregon, affected with hemophilia, good read, made me cry a lot). I read something in the book that made me feel like I am not crazy when it comes to Zander's bleeds. He will be active all day (boarder line crazy) and when we get in bed and he falls asleep, he will wake up screaming and crying and holding which ever body part is hurting (usually his right knee). He tells us he needs his needle day. A couple of the boys in the book had this same thing happen. Apparently, sometimes being up and going you feel fine, but when your body relaxes, the bleeding into the joint can be felt. I know this wont happen to everyone, but it is good to know Zander isn't alone.
Friday, April 6, 2012
In the calm of night...
I just finished reading a book, "Dr. Guilt?" (about many families from Oregon, affected with hemophilia, good read, made me cry a lot). I read something in the book that made me feel like I am not crazy when it comes to Zander's bleeds. He will be active all day (boarder line crazy) and when we get in bed and he falls asleep, he will wake up screaming and crying and holding which ever body part is hurting (usually his right knee). He tells us he needs his needle day. A couple of the boys in the book had this same thing happen. Apparently, sometimes being up and going you feel fine, but when your body relaxes, the bleeding into the joint can be felt. I know this wont happen to everyone, but it is good to know Zander isn't alone.
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I am so glad you posted this!! This is the same thing that we are experiencing with our little boy... but he isn't really talking well enough to say he is hurting.
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