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8:00 PM: We've had a few more improvements today. Sophie usually wakes up to eat three times during the night. Last night, she woke up three times, but she only ate twice. It felt wonderful when she went right back to bed after going potty. She was pretty demanding today, but there were two of us to attend to her, so it was a little easier. Her new food for today is popcorn. She had a good nap today (Randall and I joined her, which was nice), and after we picked up Elisabeth from school, we all ran some errands together. Sophie asked to go home several times, but then she would perk up and we could continue. We were able to get both cars filled up with gas today, so we're in good shape to go to clinic (and get Randall to class in the other car) on Tuesday. That's a relief. Meanwhile, I'll work at home to save gas instead of commuting 70 miles each way three days a week. Gas prices here are ranging between $2.99 to $3.49 a gallon, and a handful of stations (like the Grocery Barn just up the road from us) have no gas at all.

Complaints and concerns:

  • She keeps saying her feet hurt. That's probably a side effect of the swelling, or possibly of the extra weight she's carrying.
  • Lots of hair is falling out in the back, and she just has a little patch of bangs left. Randall just gave her a bath and said unbelievable amounts fell out when he washed her hair. I don't know if we've mentioned it before, but the roots of her long hairs are really amazing. There are basically stripes at the base of each hair that seem to mark each phase of treatment.
  • We noticed today that when she leans up against something, there are "indentations" left in her skin. The doctor said that's edema--normal swelling from the steroids and nothing to worry about.
  • We are also noticing a fair amount of bruising, some in places that you wouldn't normally expect to see it. The doctors said that's definitely something to keep an eye on, because it's an indicator that her counts are dropping. Her counts may be too low for treatment on Tuesday, but then they may be so low, she would need a transfusion. yesterday, she had a fever of 100.5 a couple of times during the day. We were glad it never went above 101, because that would mean a hospital admission. We are really hoping she doesn't have an infection. We wouldn't be surprised, since Elisabeth seems to have caught some sort of upper respiratory thing (runny nose, sore throat), and Randall's starting to feel a touch of something too. The soybeans are in bloom, so it might just be allergies.

Signs that she's starting to feel better:

  • She played in Elisabeth's room this morning for a little while (instead of lying on the couch) and found some lip gloss. She was very excited about wearing "makeup".
  • She was jumping today (it felt like the whole house was shaking!).
  • She told knock-knock jokes on the way home from our errands and laughed really hard at all the jokes we were telling.
  • She's walking on her own a lot more (which might explain the sore feet), although sometimes she can't quite make it where she's trying to go (a certain distance or up a few steps at the back door) and has to crawl. Once she's crawling, she gets stuck and can't get up, so we have to help her (it's actually pretty pitiful, but we're taking it as a positive sign that she's trying to be more independent).
  • She's also sometimes coming to get us when she needs something instead of yelling at us from across the house.
  • Reading is still a favorite activity, as is watching Scooby (will she ever get tired of it???).


It's good to hear that Sophie is a little bit better. I hope that her fever stays down and that she won't need a transfusion.

All my best, Gwyneth