Namine has taken to calling her left knee “broken” because it doesn’t bend very much. She’s been talking about wanting to get it fixed, but that means surgery — and surgery makes us nervous. It makes Namine nervous because she’s got no love for pain. It makes us nervous because Namine almost lost her foot once. As delicate as her lower extremities are, we’re not inclined to put her at risk again.
When we arrived at the clinic, the first order of business was new x-rays. This is nothing new to Namine, of course. I went back with her more for company than anything else. She chatted with the techs like they were old friends. (Since x-ray techs have been a part of her life as long as any family, it’s no surprise at all.)
After x-rays, we waited for Dr. Black to come in. I helped Namine into her walker, where she waited and exercised in bursts. She stood up for a while, then sat down. She lifted her feet off the ground, swinging them back and forth. She showed us some of her dance moves (like “crossies,” as she calls them, where she crosses her feet in zig-zag pattern).
Dr. Black came in, and we got down to brass tacks, as the saying goes. The good news is that Namine’s back is the same as it was last year. Her scoliosis has not progressed more than a tenth of a degree, and does not seem to cause her any pain.
On the issue of whether or not Namine’s knee can be made to bend, the short answer is no. The longer answer is complicated.
The first problem is that Namine has already had problems with her left leg — her foot, to be specific. The last orthopedic surgery nearly resulted in her losing that foot, and any procedure involving that leg is likely to put the foot at risk again.
The second problem is that Namine’s leg bones are thinner than those of a child without caudal regression syndrome. The thinner bones mean that there is a higher risk of them breaking during a procedure.
We could go ahead with the procedure, but we feel that the risk is far greater than the benefit. (Namine agrees.) Even though she can’t bend her left knee very much, she already works around it in her walker — in therapy and in dance — as she does climbing in and out of her wheelchair, too.