What's in a Defective Name

Today we saw Charlie's geneticist. She counted his fingers and toes and asked me a bunch of odd questions. "Is he learning the alphabet? When you go to the shoe store, are his feet roughly the same size? Any problems sleeping?"

We talked about the upcoming extra-ear-canal-ectomy, which I know some readers are wondering about. This is what I know about it: Two pediatric ear surgeons at Children's Hospital Boston, one of whom is especially good where facial nerves are involved, have scheduled five hours of their day to obliterate the extra cavity in Charlie's ear that keeps causing the balloon-like infected bulge on the outside of his little ear.

Dr. N. the geneticist said she didn't think she needed to see Charlie back in a year, because he seems fine, and there's not going to be any amazing breakthrough in the current understanding of the genetic causes of hemifacial microsomia. "We want to avoid making him feel d-i-f-f-e-r-e-n-t," she spelled, "and extra visits to the doctors probably won't help. Especially when he learns how to read."

"Yes," I replied. "It's a shame that your practice's name is so harsh sounding. I mean, I'm not one to tiptoe around the truth, but the word "DEFECTS" in big letters is not really what you want to read on your way in the door."

Dr. N. concurred and revealed that the name of the practice has in fact been changed to the Feingold Center for Children or something like that. Thumbs up! And thumbs up for one less appointment on our Tour de Charles.

Comments

[jo]

Good news all the way around! And kudos to you for saying something about their name!

[cate]

It's weird to think about how not that long ago, things were so harsh. Makes me wonder how hopeful I should be about the future, how much things will change 20, 30, 50 years from now.

anyway. good job ditching the geneticist!

[Allison]

What's the deal with the shoe size question? I'm baffled.

[Jill]

I think she was checking to see if Charlie had any cognitive issues with the alphabet question, and any breathing problems due to his facial asymmetry with the sleeping question, and with the shoes, I think she was checking to see if the asymmetry extended beyond his face, which is something that we have already figured out (it does not). I think she realized that we really don't have to keep seeing her. She's a lovely woman but we don't need her anymore. We will still see her once a year as she is on the craniofacial team we see in the spring.