Unfortunately this means she won't be back at school this week with everyone else. The doctor thinks it's just "asking for trouble." We go back to clinic again on Monday, so the earliest she can attend school is next Tuesday (but I'm not that hopeful for that date.) Next week we have to arrive at clinic by 7:15am to have her early morning blood drawn to check her cortisol levels. This will tell us if her adrenals are functioning properly again, since she has been off the appetite stimulant. She will also get her monthly dose of Pantamidine-the anti pneumonia drug. The drug takes about an hour to infuse, and it's not a great one. It causes a lot of nausea by lowering your blood sugar, so we'll try to get something in her stomach before she starts it. That should be challenging.
Hannah lost nearly another pound since last week, she's down to 21 kilos (46.2 pounds). She's still ok, but we need to try and stabilize her so that she stops losing. I can certainly tell she is no longer on the appetite stimulant. It's very difficult to get her to eat anything. She says she is never hungry, and only eats so that she doesn't have to go into the hospital. This is compounded by her nausea that we are trying to keep under control. This new drug seems to be working very well, as long as we stay on track with taking it. She waited this morning over an hour before taking the medicine after she got up, and by that time she was feeling badly. It's hard to stop it once it starts, so we have to try and stay ahead of it.
She really wanted to stay up and watch the ball drop, but at 9:30pm, I took her kicking and crying in to bed. I told her we would watch it tomorrow, when it will be on tv again. It's a bit after 11pm and Colby is still hanging in there. Dave and the dogs are snoozing too for the time being. I'll leave you with a few pictures from Christmas.