Day +294: Another good week at the Olson-Olsen household

Things are moving right along here. Mina Brigitta still is having lots and lots of energy, showing no signs of anything slowing her down. We're still tapering the Cellcept, and her skin has been a bit dry, red and blotchy in places this week, but nothing that screams out "GVHD". We're kind of suspecting the sunscreen, since the redness is mostly on her face and neck. I'd been remarking to Keri how wonderful her skin was looking lately, and it turns out she'd gone a number of days without using sunscreen, because of bad weather and not really spending much time outside. So we'll be trying another new sunscreen soon (we've already gone through three or four).

Even though this wasn't clinic week, Mina Brigitta had two appointments and I have to report what a big girl she was. She went to the orthopedic surgeon on Wednesday, and she let Keri go outside the room while she held still for her X-rays! Keri said the staff was totally amazed, and when they came out, the nurse said she was very "self-possessed". When I asked Mina if she had the X-rays taken all by herself, she said matter-of-factly, "Yeah. One standing, and one lying down yike dis!" Then I think she might have said something like "Just yike Curious George." I guess endless readings of Curious George Goes to the Hospital are paying off. The great news from the appointment was that her hip looks normal. She'd had some avascular necrosis in her femoral head -- basically, loss of blood flow to the leg bone right where it fits into the hip socket -- due to the high dose of steroids she was on. There was some real concern that it would progress, especially because she was so gimpy when she first came home. But the doctor said her X-ray looked normal, and they would have already seen it progress if it was going to, and he doesn't need to see her again. So we were very excited to hear that.

She also went to the dentist on Thursday. She had all of a sudden started screaming and refusing to allow me to brush her teeth. I was thinking it was just a toddler thing, but then I got worried that maybe she had some decay that was causing pain and she just couldn't really express it. So we figured it wouldn't hurt to get her to the dentist anyway. Mina Brigitta was a really big girl again. She opened her mouth for the dentist, and even let him put a mirror and a scraper in there. Then she got a sticker of "Bert and Arne" which she saved out to give me when I came home from work. The dentist said she has the beginnings of some decay on her molars, but nothing they want to treat just yet. But he also had some really good news. Tooth problems occur in most patients who received radiation therapy and are more common the younger the patient is. In extreme cases the adult teeth might not come in at all. But he said that usually happened in cases where the radiation destroyed the salivary glands. And he said Mina Brigitta's salivary glands appeared to function just fine. She'll probably have other dental problems, but it would be nice if she didn't have to go through life with just her baby teeth.

Isaac is feeling much better this week, and both the kids have been making up for lost time in the eating department. Isaac is still having trouble with his bowels, though, and Amber thought we should get him checked for the c. diff. infection, which can pass through saliva. Dr. Horn said it was virtually impossible for him to get it, but he's probably had a lot more exposure to it than almost any other healthy kid, so we will probably get him tested anyway. The poor kid has sensitive skin, and his bottom is really inflamed these days.

He is now singing a second line to "Twinkle Twinkle Little Star", so now he sounds kind of like "Uppa buvva wo wo why, eye-ka di-mo wo wo wo". He's also singing the song "Trotman Joe", which goes something like "Trotman Joe, Trotman Joe, who's the best horse in the country oh." Keri says when they do it in music class, they all lean back and say "Whoa!". So Isaac sings "Doc oh doe, doc oh doe" then he kind of pauses, and then he leans way back and says "Whoa!". Sometimes Mina joins him and they sit side by side on the floor, drumming their thighs to the beat of Trotman Joe, and leaning back and going "Whoa!" It's very very cute. Isaac is in full monkey mode, and he's able to do a lot more these days. Mina is still pretending she's a cat, so now she spends a lot of time crawling around meowing. Tonight Isaac was doing it too, so both kids were crawling around on the floor meowing for about 20 minutes.

So lots of good news here. We're not tentatively planning a trip to the Northwest for Mina's 3rd birthday in mid-April. Lots can happen between now and then, but we could really use a break and it would be wonderful to connect with family and friends again outside the hospital. So we'll be keeping our fingers crossed.