· Normal is a dryer setting.

caudal regression syndrome

Feeling more like herself

Namine is in bed now, but she is not asleep. Oh no, far from it. I had quite a time trying to figure out what my two year old wanted, exactly. It turned out she wanted her mobile animals back on her mobile (they have been off for quite a while; they have been since she pulled them off) before she would settle down. We suspect she’s developing a fear of the dark, too. So I put Namine’s safari lamp at the far end of the room, where it provides a night-light-ish glow to the room.

Read More

Ortho clinic, a fall, and a visit to the ER

Jessica and my mom took Namine to her ortho clinic this morning. Just when you thought things were pretty much down to routine, excitement got dialed up a notch. My mom fell walking in to the clinic from the car, and she was holding Namine. Namine seemed unhurt, just shaken up; my mom sprained her wrist and hurt her knee, but nothing is broken, so far as she knows. As for the clinic visit itself, well, those are always stressful for Namine.

Read More

Through the eyes of a child

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.

Read More

Knowing the facts: caudal regression

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.)

Read More