Life in the Rhino brace

We have been almost full time in the Rhino brace for about 3.5 months now, longer than we expected with quite a bit of time to go. I wanted to wait to share our experiences until we really had a grip on living with the brace, and I can definitely say it has become no big deal. I don’t like it, I can even say I hate it, but what I really hate is not being able to wear cute clothes with summer quickly approaching.

The first weeks were a bit rough. Maura was very weak after her 3 months in the spica.

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Few hours post-spica removal.

She couldn’t sit up on her own and her legs seemed to flop in every which way. One of her very first tantrums (and really one of her only ever) was when she tried to sit up and couldn’t. In the cast it was like she knew the cast was keeping her from sitting up, but when it was gone and she still couldn’t, she was really upset and frustrated – to the point of hitting her head on the floor and pulling her hair – poor kid. I ended up bathing with her in the tub for about 2 weeks, it took that long for her to get sturdy enough to sit alone. We also couldn’t fit the brace in her car seat as we were told we would be able to. The ortho did give us permission to take it off for car rides, which is great – but not fun in reality. I was taking the brace off, putting her in the seat, getting where we were going, putting it back on often in a parking lot, doing our errand and then repeating to go home, or repeating several times to do multiple store errands! We didn’t get out much during the first few weeks…

We had a follow up appointment and X Rays 2 weeks after the cast came off. Maura’s hip was looking great, very stable in full range of motion even under light pressure. Her acetabular index had gone from 48 degrees to 35 (we wanted under 30 at 6 months, and closer to 20 by age 2). Her ortho declared “Perfect Progress” and expected further improvement with the brace. Woohoo! We also brought up our concerns with the sizing of the Rhino – to which he agreed to let her try on a larger size. The nurse assumed it would be way to large, but to her surprise it fit very well. In the larger size brace Maura was able to move around a lot better, mostly due to the ability to now bend at the waist. Think – jeans that fit compared to a waist band two sizes to tight! The new size also allowed her to fit in her carseat!!! That made life a lot easier.

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A week or two post spica 

Once the sizing was right, Maura started right in trying to find her legs and get moving again. She was able to army crawl, as she did in the cast, immediately. The second day in the brace, she even pushed herself into downward-dog briefly while dancing to Sesame Street! Over the course of weeks, her knees started getting more underneath her and her crawl became more normal opposed to the army crawl dragging her legs. Though her legs don’t move individually, she seems to tilt her pelvis back and forth allowing her legs to take turns and move her forward. It took about 2 months to sit up straight, legs in front of her while in the br

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2ish months post spica

ace. I’m not sure why it took her so long, but maybe a combination of weak core and needing even more strength to counteract the pressure of the brace pulling her back. I really don’t know, but once she mastered
that her milestones really started to take off. Almost at the same time, she started not just pulling herself to stand (she actually did that within 2 weeks of cast off), but pushing on things that would move like the rocking chair or boxes. Now at 13 months old, and out of the cast for 3.5 months – she is standing unassisted for a few seconds at a time and even took a few independent steps tonight!

I think the brace is easy, but only because the spica was rough. If we hadn’t done our time in the cast, I don’t think I’d have the same opinion. But, here are some tips and tricks to make things work…

Verify that it fits properly! Ask to try on different sizes if you can. This made the world of difference for us.

  • We still use our Spica table for meals. We tried using the booster seat we used during the spica days, but found that Maura’s core strength wasn’t enough to sit up in it without the cast. Now, she can use the booster but there was a good 2.5 months that there was no way.
  • The Velcro will wear out, way sooner than you expect it to. I bought a large role of Velcro from JoAnn’s and reinforce the straps every few weeks with fresh sticky Velcro. I attach it with thin strips of colored duct take.
  • You can also extend the straps using the new Velcro or with felt. If there is any rough side of the Velcro exposed it will scratch your forearm and leave scars. It’ll also ruin any clothes (on you or them) that is woven.
  • You can use a fine comb to comb out the fluff that will immediately collect on the brace. I usually comb it well, then use duct tape to pull the remaining fuzz out. It’ll never come completely clean though – keep your expectations low.
  • Put towels or blankets under the brace if you’re going to let your kiddo sit on anything that could scratch, I keep a dish towel in my diaper bag.

 

 

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