February 21 2009 - Lost some ...

James has had a number of appointments recently. The GI doctor says he probably has some gastroparesis (partial paralysis of stomach muscles, which accounts for nausea and vomiting, and yes, I spelled it right the first time). The neurologist was encouraged by James's lack of seizures and was afraid to lower his doses since he is doing well in that area. Mary was encouraged that there were answers to our questions, and that the neuro said he was doing better than expected, but poor James is so extremely doped all the time.

Gastro doctor said to check residual in stomach and remove via tube if it did not drain on its own. We did that over the weekend, and James's stomach was behaving normally. He was still coughing and retching, even though the stomach was empty. So much for that.

Last Sunday (2.15) James had his first big seizure since Christmas Eve. Mary automatically gave him a dose of Ativan that was probably more than necessary, since he has not had any in a long while. By Wednesday James was more perky and responsive when Mary saw him. This week he weighed 131, which is a healthy weight for James, but 10 pounds lighter than last month.

Next week, the wheelchair vendor will come to measure James for "modifications". He has a fixed-back wheelchair, but now he is too weak to sit up on his own. Probably he will get a harness that will help him sit up. At home or here, he is in an easy chair and can recline.

All I can do at this point is love him and pray for him. I am not functioning at a normal level; I sleep a whole lot and keep very odd hours (note time stamp; this is early). Mary manages better, but she is also tired and depressed. Please pray for us all. Thanks, B