There is no doubt her tone has improved (now has less tone than pre-SDR). Her left foot bends nicely at the ankle, and we have no problem getting her into her AFOs (we just started wearing them 2 days ago, but she still doesn't wear them all day). Her right foot has always been the problem. It's amazingly easier to put her in her AFO on that side, but after minutes of playing, I noticed her heel was "up" again (near the hinge). I was dissapointed b/c I didn't think that would happen. Well, not happen YET--I figured it would definitely happen (probably on both sides) as Elena grows (growth spurts typically are problematic for spastic diplegics, even post-SDR). Why wouldn't E's right heel stay down? Still too much spasticity post-SDR? Muscle memory (after all, E's been moving with her right heel up for YEARS)? Heel cord contracture (tendons too short)? Leg length discrepancy?
There was an initial disagreement between surgeons regarding which surgery to do first, the SDR or heel cord release--basically her heels are (were?) up b/c of spasticity (muscle tone) and tendon shortening (due to her calf muscles being in one default position too long, b/c she is always on her toes). It's hard to tell which issue is greater because they mask each other. Now that the tone has been lessened, it's possible we're seeing a contracture. We will most likely lengthen her tendons surgically at a later time.
Since she is young, I am hoping we can stretch her tendons over time to postpone surgery for a couple of years. I don't know if that is possible. We're going to stay as conservative as possible. Of course, if it's just muscle memory or lack of confidence that is preventing her from standing up straight with her heels down, that should be easier to remedy.
Emily testing range, right (left is fine, not shown):
Emily testing range in her AFOs (socks are always on, but we left them off for viewing/pictures), right. Note when light pressure is removed, her heel comes up. We need to have her AFOs fit more snugly to keep her ankle down as much as possible.
Standing in AFOs, left and right side pics:
Doesn't the right look better standing up?
Standing zoomout (note she is bent over at the waist). Her posture should improve with some stretching and boost in confidence (she is still not standing very often).
To passively stretch her legs, Emily gave us knee immobilizers--velcro straps with unbendable planks to keep her in standing. When (and if) her AFOs can be tweaked to keep her heels down, these immobilizers will help her legs to stay straight while keeping her knees from caving in (classic spastic diplegic stance). She tolerates them very well. Ideally she'll wear them for 30 minutes a day--today we did 6 minutes.
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