Namine is making progress. She is still in pain, but seems to be dealing with it a little better. That, and we have a better idea of when the meds start to wear off, and we can sort of anticipate when she’ll need her next dose. Namine is starting to learn to move around again.
Namine sat up by herself in the changing table again. She’s funny; sometimes she’ll refuse to accept any help, but sometimes she’ll be convinced that she needs it. Tonight was the latter.
I’ve been talking more recently about Namine’s caudal regression. Not a whole lot is clear about it; what may or may not happen in the future, even the current state of her hips, legs, and feet, all of that – it’s uncertain. But one thing is for certain: she’s not a normal child. It’s evident that she’s not a normal child, because her legs are shorter and her feet are shaped weird. So of course, people who don’t know her stare. At the mall, we still get stares; by now, you’d think we’d be used to the stares by now, but every once in a while we’re again surprised that we get angry at those stares. But do you know who doesn’t stare? Namine’s playmate friends in the neighborhood.
Namine was originally diagnosed while in the womb with spina bifida. This was before Children’s Hospital of Wisconsin (hereafter known as CHW) ever entered the picture; this early diagnosis was in Jessica’s OB’s office. (Not the pig-headed one who screwed up her c-section, the good one who referred her to the wound clinic.) But spina bifida is not something you mess around with; the doctor referred us straightaway to CHW. Sitting through that first ultrasound was one of the scariest moments of my life. (And Jessica had to switch OBs, a choice we still regret.)
Namine seems to be doing well. She’s happy, active, and she’s keeping up with her usual appetite.