CP study

Today I took Danielle for an evaluation for an ankle-strengthening study for kids with cerebral palsy. Knowing that we only have a tentative diagnosis of CP, I had explained all of her background to the physical therapist heading up the study in case they needed to exclude her.

The took lots of video of her walking (with the cool reflective "sticky balls" stuck to various joints) and measured her muscle response with electrodes. They tested her ability to stand up without using her hands, to jump, to run, to sit and balance while bending for various objects, and to step over obstacles. A few highlights of the day:

The therapist wanted to see Danielle walk up stairs, so she took her to some stairs and had her walk up them holding on to the rail. Then she showed Danielle how she wanted to see her walk up the stairs without holding on to the rail...step, together, step, together, etc. So Danielle went over to do it and promptly walked up the steps...step, step, step, step. I started laughing and asked if the therapist had wanted her to stop on each step. She had a look of astonishment on her face as she said "no, that will work just fine!"

The therapist did lots of measurements and feels (as we do) that Danielle does not fit the norms for a child with CP. She has a couple of markers (toe-walking and strabismus) but none of the typical muscle tightness markers that most kids with CP have (and no typical brain injury markers for CP). She spent a lot of time saying "this is so interesting" and "this doesn't make any sense" as she measured various things. :)

Everyone at the study got a big kick out of Danielle's English (she's understandable, but sometimes she says the weirdest things!). So the therapist taught her to say "gluteous maximus" for some of the muscles she was attaching electrodes to.

Danielle was really a trooper. It was about 5 hours of testing and she was so good-natured about it. She will be in the study which means we have added 3 hours of therapy to our week (I know!). But the therapy is free and is targeted to strengthening her ankles, which we know she needs. I did tell the therapist that I already knew the outcome of their study, as I have watched Danielle's walking improve tremendously as her legs and ankles have strengthened. :) I think we totally piqued the therapist's academic interest in a case like Danielle's, where her circumstances made her underlying medical condition much worse than it needed to be.