Monday, October 8, 2007

October 8 Update

The little pischer discovered that if he "doesn't feel good", he doesn't have to go to school. His Grandma came to town for a visit last week, so he decided he didn't feel good. He stayed home from school that day and got to play with Grandma. In the next few days, he got a little cold, which he's attempted to milk so he can stay home from school. Now he's just fakin' it every morning. I'm starting to threaten him that he's going to have to repeat first grade if he misses more school. Since he does have occassional bouts of nausea as a result of his condition, it's hard to tell when he's crying wolf.

As soon as we complete parent training (which is a story by itself), he starts daily Human Growth Hormone injections at home. I'm sure it will be an ordeal at first, but hopefully he'll get used to it. He's now used to his yucky Sunday Kaexolate dose and his bandage changes at dialysis, so it will be a matter of time.

Monday, October 1, 2007

October 1 Report

Jake's still doing well in school. He's very good in math, and is progressing well in reading. The only part of the homework where he gives us grief is that he doesn't have the patience to color the pictures after he's filled in the answers to the narrative questions. We cut him some slack on that (for now).

It's been over a month since he vomited ("Does your tummy hurt? Mommy, you know I don't throw up anymore"). The new bandage-changing procedure is working well, and he says he doesn't mind going to dialysis. One of the other kids in the unit (with a different form of HUS) had her kidneys resume functioning, and he was stoic but disappointed ("I hoped that hers and mine would come back at the same time").

We received a second opinion pathology report from Columbia University Hospital, and they are very pessimistic. They don't think that his kidneys are coming back. We'll have another 24 hour urine analysis next weekend, and we'll see what that brings.