Questions and Answers

From Nina's Gait Analysis Post.

Is she putting much weight on her legs?
Yes, as much as she can. She has such high muscle tone that "contracting" is basically all her muscles are doing right now. When she walks holding on to our hand, she tires quickly, so she cannot do that long distance. But the fact that she is walking with a walker and moving her legs means that her legs and muscles are doing something right! Her walker allows her to last on her feet a little bit longer, mainly because she does carry her weight on her arms and legs, so it is not her legs doing all the work.
In the video without the braces in particular, it looks like she's putting almost all her weight onto the walker via her arms.
Yes she does, and she can get her feet moving pretty fast and then "cruises" with her feet help up. She loves it! It really seems to be a lot of fun!

If that's the case, it would suggest that she has good strength in her arms. I wonder if she could benefit from forearm or platform crutches?
I thought so too! But turns out crutches are not necessarily about arm strength! Nina does not have the strenght in her legs, the balance in her body, or the coordination to use crutches. There is a lot that goes into using them. A walker provides an entire "frame" of stability, which Nina needs, as opposed to only 2 points. Does that make sense?

Can she stand un-aided?
No, not at all.

I can imagine it's incredibly difficult for her to balance on those tippy toes, and bent knees! It's hard enough to learn how to walk as it is; adding the tippy toes and bent knees must make it incredibly difficult to balance.
Not only is it hard, she is terrified of falling down because her body "contracts" under pressure, and she cannot break the fall with her arms. So every time she tries to balance, if we don't catch her, she is sure to hit her head :(

And one last question: ultimately, is she going to go from the walker to independent walking or is there some intermediate step (like crutches or something that I'm not thinking of?)
Hmmm, good question. I am assuming that she will still use the walker at the beginning, and form there she will be like a baby, taking a couple of steps first. Once she is walking short distances, maybe she will get crutches (depending on her gait after surgery)
The reality for Nina is that she will most likely always have a wheelchair for long distances, but, on the other hand, she might surprise us and turn out to be a runner! Now wouldn't that be exciting!

From the Rifton Gait Trainer Post

Does it actually hold the child up in a standing position so that they can't sit down? We have a walker for our little girl, but she stops and crawls off all the time... She needs to stand at least an hour a day to work on strengthening her muscles and something that she had to stand up in would help.
The harness helped keep her upright, but it "carried" her too. Even if she did not put any weight on her legs, she could relax comfortably. Has your PT talked to you about a stander?

How about a little girl with Arthrogryposis from the same country as Nina?
Yes, for a little girl with arthrogryposis!  Nina's walker is for Sophie!

From Nina's Spastic Diplegia Post.

Is her extreme spasticity and lack of flexibility due, in part to her CP being ignored (more or less) for the first few years of life? In other words, say someone had been working with her intensively from day one. Is it likely that that would have resulted in an improved condition today? Or is it one of those issues that can only be significantly improved through surgeries and stretching over the course of years and decades?
Well, I asked our PT so that I could answer your question better informed! Yes, her overall condition would be a lot better. Meaning, she would be a lot more independent and mobile. Her muscles would be used to stretching. Who knows, she could even be walking on her toes. Maybe her gait would be a lot better, even following  surgery. However, the outcome would have been the same. Her muscle tone would still be very high, and we would still be looking at a rhizotomy as the best option for Nina.