In the past 2 days, I’ve found 2 new flare-ups on Miranda’s back. I should have known it was going to happen, because a couple of nights ago she had a very restless, fidgety sleep (we keep a baby monitor in her bedroom, so I can hear this). Tossing and turning and whimpering in her sleep are almost always signs that Miranda’s about to develop a flare-up…
The first one I found is on Miranda’s right lower back, right on top of a bony knob left behind by a previous flare-up. The new swelling makes the old knob stick out a lot more. The second flare-up is on her right upper back, and so far is about the size of a dollar coin.
When I find new swellings on Miranda – and it’s always me who finds them – I feel like I’ve been punched in the gut. A whole crop of old, familiar worries spring to mind – will either flare-up spread to her arms, or worse, her legs? Will she lose mobility? Will her back be further disfigured by new knobs? Unfortunately, there’s no way to know until it happens, and no way to stop the process. All we can do is wait and see. It’s a horrible thing to have to worry about.
Miranda hadn’t had any new flare-ups for a few months, and I was really hoping she’d go a nice long time without any. A couple of years would have been terrific, and other parents tell me their kids have had breaks that long. However, it wasn’t to be.
Ironically, Miranda doesn’t seem bothered at all by these new flare-ups. If I touch them, she’ll complain that they hurt, but otherwise she seems to blithely ignore them and they don’t trouble her. Yesterday, her big focus was giving out birthday invitations to the 4th birthday party we’ve planned for her in a couple of weeks. She was SO excited to be able to hand these out to her little friends at daycare.
Maybe Miranda will get lucky, and these swellings will be like the last couple that she’s had – small, localized and staying in one spot rather than travelling up and down her back. Please wish us luck in this regard.
