Feeling a little...crushed

It's been a whirlwind as the school year winds to a close.  Vivian has finished preschool, Elena finished her testing (yay! with no meltdowns!) and has less than two weeks left until summer break. Jason and I went on a short vacation, with his parents taking care of the kids.

Things aren't bad here. But I'm stuck in a bad mindset.

Elena is tight. I know that, I've seen it for a while--the emphasis on testing/studying/tutoring results in a LOT of sitting. Her crouch gait is markedly worse. She hasn't grown a bunch in the last six months, so it's not about that. I don't know what happened (besides school?) but...frankly, her posture looks terrible.

I am hoping that with summer coming, she'll have lots of opportunity to stretch, move, play, and have fun. After her ortho appointment this week, though...I can't help seeing the future in dark colored glasses.

Her hips "seem fine", her contractures "aren't that bad", and her joints "seem okay" and she is "pretty flexible". Sounds okay, right? That's what I thought. Her main PT keeps talking about how she needs a sustained stretching regimen (impossible during the school year, unless it's at night--again, impossible to implement successfully during the school year) and her doc agrees. If that doesn't work, I assume surgery is on the table to try to help her get out of her crouch so she can avoid a lot of pain later in life. But with surgery comes weakness, with weakness comes poor posture, pain, less mobility. Elena is such a happy kid and loves to play. I don't want to be negative but currently I feel in a very hopeless emotional state.

She has patella alta (high kneecap) and honestly, probably has for quite some time but with a new diagnosis/description it hits like a ton of bricks. Common with people with diplegic CP with crouch gait. So I did some research (with any research on CP, there isn't much that I feel really fits with us, as every case is so unique) and I found this:  Cerebral Palsy lifetime care--four musculoskeletal conditions is an article that covers patella alta, hip dysplasia, spondylolysis, and cervical stenosis.

Elena does have shallow hip sockets; I'm not sure if subluxation is an actual concern, but developing early arthritis is. She has lordosis, crouch gait, and has had a rhizotomy, all indicators of developing spondylolysis. I stopped reading in a pile of tears. I feel most of this article rings true for Elena.

If her gait wasn't so poor lately (it got worse in the last 4 months or so) maybe I wouldn't be so emotional. And when I've reached a breaking point enough to write about it, things tend to turn up, so I am hoping this is true. As she gets older, and disability sinks in, I see her less likely to try new things and mix herself in a group setting. Not entirely-it could be that she is saving energy, or is smart enough to know what she likes and does not like to do-but to me, it seems like some of the "can-do" flame is burning out.

She hears all these suggestions from therapists, doctors, and Jason and I-things to hopefully make things better or keep bad things at bay. I'm afraid what Elena hears is "YOU ARE NOT TRYING HARD ENOUGH TO FIX YOURSELF". That isn't the message (!) but I think that is what she thinks it is. I'm trying to listen and learn and help her to use her body as best she can so she can do as many things as she wants to do.

Without going into too much detail (b/c I'm tired and emotionally drained right now) it looks like the short-term plan is night stretching, possibly botox (hamstrings, adductors, and calf/soleus? I don't know), massage with the intent of bringing the kneecap down (manipulation of some kind, it's "not supposed to be painful" but it sounds like it is), and a new stander. And fun stuff, but this isn't a fun-stuff kind of post.

Please comment if you know about this stuff. I'd love to know what you have done, or what you've told your kids, or what worked (short/long term) or what didn't. Any info is appreciated.