About a month ago, we had a follow-up appointment and x-ray for Diya's hips. The news was pretty discouraging. In the two months since our last appointment, Diya's hip had made no progress. Two months of full-time brace wear (on top of the one month before the appt, as well as 7 weeks of cast + 2 weeks of harness) and we had nothing to show for it. The angles of the hip were exactly the same as last time. We may as well not have even come in for the x-ray.
It was a huge blow after the success of our first post-op appointment where Diya had been ahead of schedule. In my head, although I knew it was premature, I had pictured us maybe coming off the brace during the day and graduating to nights only. To make the whole thing even harder to swallow, Diya had just turned one. And back when all this started, I had hoped that by the time she reached 1 year, we'd at least be down to only wearing the brace at night. The process has already taken a lot longer than I had initially hoped, though I guess I didn't realize back then what was reasonable to hope for.
And then, to cap it off, after the appointment, I decided to post my frustration on a hip board that I've been part of for a while. I also mentioned that Diya still had a hard time moving her legs, especially the bad one. She won't straighten it out downwards. I keep reading about babies being able to wear pants again once they were out of their spica cast. But we can't get pants on her still because she holds her legs in the froggy position even with the brace off. She cries when we move it. Bath times had been especially rough because she can't sit up in the baby tub. She seemed fine as long as she was lounging back in the tub, but when we tried to raise her a bit to a sitting up position (to scrub her back or let her play with toys), she'd start wailing. The problem is, in the tub, the legs are scrunched in a bit. She can't hold them out horizontally because the tub is too small. Not sure if that makes any sense the way I'm describing it.
Anyway, so I mentioned the pain in my post, and suddenly, I had a bunch of people responding saying that I should get a second medical opinion. Because that kind of pain doesn't seem normal. So THAT was fun to hear. Nobody talked about what would be a reasonable progress to hope for in terms of hip angles between doctor appointments. Which is what I'd been mostly frustrated about. So overall, the post was a bust.
AND, the week before this, we had gone in for our 1yr check up with our pediatrician, and she had also been concerned about the pain. She told us to ask our specialist about possibly trying physical therapy because she should be moving her leg a bit more than she does. So in light of that, these posts were especially fun to read.
I LOVE our ortho doc, so I was able to read these responses without having a meltdown. At the actual ortho appointment, the doc and occupational therapist had been unconcerned about the lack of progress. These things take time, they said. Diya is still doing fine. And as for physical therapy, she doesn't need it. Of course her leg will be stiff from holding it in a brace all day long. When she's allowed to take it off, we'll be surprised at how quickly it'll get back to normal.
So I guess medically, all is still fine. The projected time for full time brace wear is 6-8 months, we're still just at 4. So I can't hope for miracles, I suppose. And of course I need to stop posting about my appointments in online groups. But I'm not very good at waiting, and lately, it just feels like we've been waiting for a long long time. If she doesn't progress any further, then the next step is more invasive surgery. But no one is ready to talk about that yet. There's nothing left to do now other than wait for our next appointment which is still another 5 weeks away.
In other news though, Diya is getting to be much more active despite her brace. Within the last few weeks, she's started "crawling." It's an army crawl, with her pushing with her arms. But she's actually gotten pretty fast with it. Until this week, I could leave her on the floor of our room while I showered and expect her to quietly play with her toys. I can see her through the shower door, and she can keep herself entertained pretty well. On Monday, though, I watched as she pulled herself along to the nearest electrical socket and started poking at it. So if you'd been a fly on my wall that morning, you'd have seen me rushing out of the shower with conditioner in my hair trying to move her. Only to have her then make her way to the other side of the room where the dog water is and be sitting in a little puddle before I could dry myself off. In the 4 minutes it took me to feed the dogs that morning, she'd found the OTHER bowl of dog water in the living room. Is it bad that I start cracking up whenever she does this?
Bath times have gotten much more pleasant, so I think she is able to move that leg a bit more now than before. We're able to sit her up for brief periods during the bath without fuss. And I think that was really the only source of distress during the baths. Now that she's not all freaked out about her leg hurting, she's been splashing and enjoying the water just fine.
A few weeks ago, she started sitting up, which is something she hasn't done since before she got her cast. She does it with her legs splayed out, like a gymnast doing splits. Until now, she could never keep her balance this way, and lately, she's been starting to get better at it. I know it's cheesy, but I feel so proud of her when she does these things. Probably even more so than your typical parent, just because I see how difficult it must be with that big brace on.
So I guess progress does come slowly and eventually. Ultimately, these new milestones don't say a whole lot about her hips. That is, she could be army-crawling through the house at lightning speed, and it doesn't mean that her hip is getting better. But for her sake, I'm glad that she's able to be more mobile. Cuz she could be in this thing for a while longer still.
And I guess it's pretty darn cute for us, too. Though it means that we might have to start baby-proofing after all.
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