That picture in the previous post looks nasty, but it looks alot worse up close. She’s had that swelling for nearly a week, but now there’s a lump on top of a lump. The new lump looks more like the freaky FOP lumps you see around the ‘net.
The swollen area feels warmer to the touch than the rest of her skin. Erin really likes to be lightly tickled over the area… it’s very soothing and calms her down when she’s feeling uncomfortable.
Erin fell asleep in my arms (while watching Oobi on the couch). I took her up to her bed, and accidentally laid her on her right side. She was grumbling in her sleep, so when I moved her over to sleep on her left side she was fine. I stayed in bed with her for a while.
She’ll probably get up in the middle of the night and come to our bed. It’s hard not to let her, but we don’t get much sleep with her tossing and turning. We’re just going to have to start putting her back in her bed and break her of this habit.
We’re trying other tricks to get Erin to take her steroids and Aleve, but she’s still not getting the full dose. Today I mixed in the Aleve syrup in with the top of a GoGurt (yogurt in a tube). She seemed to take most of it, so hopefully this is the new way to medicate her.
I’m not sure how bad it’s going to get before the swelling gets any better. The swelling on the front of her chest is over, but her back is much worse. The front swelling seemed to last about 2 to 3 weeks from start to finish. I’m not sure if new bone was left behind or not, but she still has alot of arm movement left. Her back is really bad, so I’m not sure how much new bone growth is going on.
I know we’ll have to deal with flare-ups from time to time. There’s really nothing that can be done to prevent new bone growth, so right now we can only treat the symptoms.
