Almost 7 years

Elena will be 7 on April 30th.



I knew I'd be donating her first pair of crutches to the therapy center; what I didn't expect to find in the storage closet was every pair of AFOs she'd ever had. And most of her shoes (not all of them, but the ones that had been specially fit for her--most of these have lifts in the sole, or additions to the inside of the shoe).

E got her first pair of AFOs at 18 months. When she started bearing weight on her feet, her pronation on her right foot was so bad she stood ON her navicular bone--the bony "nub" on the inside of your ankle, and her toes on both feet "clawed out".

These braces--every one shown here--were integral to the mobility she has today. I can't thank Bryan Fuller and Virginia Prosthetics enough.

I don't have the walkers anymore--they've long since moved on to other families--but she's had three of them, the first one was SO TINY. I remember her first time on forearm crutches--she was so scared, and she HATED IT. Now she's on her second set--pink again, of course.

Sometimes I get all choked up thinking about it...

You've come a long way, baby.

CME report: Changes observed

I thought I would post the minute I thought I was seeing results with CME. We have been doing a few exercises at home, and she has PT twice a week now (but that's only been for two weeks; previously CME was only done 1x/week, and sometimes for only half the session since early December).

One of E's biggest issues is her right hip/knee/heel. She dips her right hip in, her knee caves in, her heel comes up, and normally that's how she comes crashing down.

We've been looking for the right voice cue for keeping her hips square: we've tried "hips", "pockets", and "headlights". Last week Theresa put stickers on her "headlights" (hips). I put the sticker on her left hip way back, so she'd have to square her right hip to see it. Then Theresa did some exercises with E facing the mirror. CLICK!

E's posture has definitely improved, and I think it's the CME. Squat-to-stand on the floor, she can do it (when I am holding her ankles) barely caving her right knee in. When she is standing, if I tell her "headlights" she squares up her hips and is much more stable. She can also take up to 7 steps with sneakers on, without AFOs, at a slow, not-falling pace. She can cruise along the house (one hand on a wall) barefoot, slowly, where she has her feet mostly flat (she walks toe-heel, but her foot is essentially flat for at least part of the stride). When she brushes her teeth on a stool at the sink (at night, she's barefoot) she can have her feet flat, hips square, even when she's leaning over the faucet. That's all pretty new!