DAY 94: So Now What?

So what next?

Are other kids with CP likely going to start walking with sticks or crutches so soon after starting on the trace minerals?

Two very good questions, and both questions I want to answer as publicly as possible to those interested in N’s most recently discovered progress; I only hope that my “parent” response will do N’s therapists more educated thought process justice. I’ll try my best but this will probably get a little long so bear with me.

When we adopted N at 3.5 years old from Ukraine, she could only sit up if in a ‘W’ sit. Her hamstrings were very short and tight, as were her achilles. However, having seen other kids in similar or even worse condition be put on walkers immediately upon coming home, I was certain she would too. We even went to Shriners and they did give her a walker right away, but we never did end up using it. Why?

The therapists we work with approach this area (and likely others, I’m sure) of getting kids with Cerebral Palsy up and walking, much different than most other therapist and doctors. I know this for certain because I have not met anyone online or off (and I know hundreds of people online through the adoption and special needs community) that have withheld a walker from their child with CP and this is not what their therapists have been suggesting for their children. The variety of doctors and school therapists we’ve dealt with are not in agreement either…and let me preface this by saying that I, personally, am not saying that every other way is wrong, I’ve seen lots of kids make great progress and begin walking independently after using a walker, but the approach by which we have agreed to pursue is different.

Here are some of the thoughts that support withholding the walker…

• When you first give a child with CP a walker they usually use their arms, instead of their legs, to stay up; the walker moves and their little legs try to keep up, there is not much control like “true” walking.

• Usually the kids legs look a mess when they are handed a walker. They may be up on their toes, legs turned inward, knees/thighs clinched together, legs crouched, etc. A body walking in such poor position isn’t going to last 80 years like that; it wasn’t designed to. To my understanding, many of these kids “walking” with such bad positioning while young will find themselves in wheelchairs permanently by high school or young adult age. The body begins to wear down.

• With improper positioning and learning to walk using their arms to hold them up, kids are less likely to get to a place where they will become able to walk independently, using just their legs with no upper body support.

I ’m sure there is more and could have been better explained but I think that explains it in a nutshell.

So rather than hand N a walker just to get her up and moving without the assistance of another person we have been approaching it this way…

·        With the use of a stander or knee immobilizers (and AFO’s of course), we get N up and standing so her body is bearing her own weight, which everyone agrees is important for strong bones, but proper positioning is key to building the right muscles for standing. Kids with CP will use various other muscles than the ‘typical’ person to do things, such as standing or walking, to compensate for their weaknesses, tightness, and spasticity. Building the proper muscles for each activity will help the child to be able to do it more typical movements.

·        Using and building the proper muscles will help bone growth to be more typical. For instance, N’s left rib cage on the bottom the bone curves outward. It has been getting better as she builds her core strength because the muscle is now pulling down, as it should, and “molding” the bone properly, when previously the muscle was not strong enough to do so. This would be the case for all the muscles in the body, as they pull or are used, they mold the bones, and of course, we want her bones to be molded as the body was designed to be.

·        As with using the muscles more typically and building strength, the same would be true for stretching muscles and tendons. If we want long hamstrings, we need to be stretching the hamstring regularly. We can spend ten minutes a day doing a stretching routine or we can do activities daily that support proper positioning that “naturally” stretch and build muscle where the body needs to for more typical movements. Using a walker with improper body positioning would be the opposite of this.

·        There is also the component of needing to teach the brain how to operate the body. Think about someone who has not used a muscle in a long time, maybe been in a coma for a month (have a friend like that) and then needing physical therapy to not only build the strength to walk again, but remembering how, getting the correct message from the brain to the muscle. Even with N, when we first adopted her, she could not crawl using alternating legs but did more of a bunny hop, bringing both legs up at the same time. She had to learn how to dissociate those legs to work one at a time. We are still working on that for the split kneel. With learning to pump her legs on the swing, therapeutic techniques are used to help her identify which muscles to contract in order to produce the proper in/out movement of her legs. So with various activities, using proper body movements, such as riding an adaptive bike, standing, or even walking with knee immobilizers on, help retrain the brain for proper use and movements.

Again, that’s just some of the thinking in a nutshell (my best parent understanding and explanation, anyway).

Here is a pic of N's legs when she is relaxing. It's certainly not how we want them to be when she is standing. So in addition to AFOs we use strapping to position her legs correctly throughout the day. This is especially important when she is doing any standing or walking (as she does with assistance for therapy).



And here are some pics of her ready for bed. She wears knee immobilizers to give her nearly 12 hours of straight leg time (especially since she spends the majority of her day sitting or crouching) to get that lengthening. She also wears her SMOs to bed (if she had new AFOs she'd be wearing those instead but we have been holding off on ordering those just yet because of her rapid progress on the minerals). And she wears straps that help rotate her legs out at the hip as they should be. She sleeps on her stomach to not only help with the straight legs (because of gravity) but mainly to stretch her hip flexors, also made short by crouching and sitting all day.

With all of that said, this is why when N started taking the trace minerals, she was not already using a walker but rather, the wheelchair…and still is. The minerals have done a TON of good for her that cannot be denied. For one thing, N’s achilles were so short and tight, she could not be positioned to standing with flat feet. Now again, a difference of approach, she was not placed into typical AFOs that would “force” her into a flat foot position like most kids with her CP issues would be. The reason being is that it would have further compromised her ability to get out of the crouching position. Instead, N has been wearing AFOs with a built up heel lift on the underside. So just like we typically wear shoes with a bit of a heel, so were her AFOs. The thought process to support this approach is that our desire has been for N to learn to put her weight back in her heels and to get away from toe walking, all the while beginning to stretch her achilles and hamstring little by little. The goal was to eventually work our way down to a flat standing (for lack of knowledge of the technical words for that lol) once those areas were lengthened and she learned to put her weight back in her heels she could wear typical AFOs. Much to our surprise and tremendous delight, less than 3 weeks on the minerals N was suddenly able to have flat feet while sitting and when positioned to standing. We were able to ditch those AFOs with heel lifts without needing heel-cord surgery!!

But the thing is, of course every kid and situation with CP is different, there is no way to say if N would have been using a walker that should would or would not have accomplished what she just did using the walking sticks this weekend. My best guess is that she would NOT have. She likely would have had much worse positioning, not have learned the balance she has because she would have been practicing on the walker incorrectly, and would have needed her arms more for balance…with walking sticks that could be pretty disastrous.

So now what? Will we give her walking sticks and just let her go (not that she’s really ready for that anyway but..)? No. Actually, her therapist would not be thrilled to see her just take off with the sticks and still be somewhat crouching, or become too dependant on the sticks for balance. However, we are all in agreement that we need to change up some of the things we are working on to get her to be able to use the sticks in a more proper alignment with the goal of going down to one stick to none. Will I still sneak a few trips down the hallway with N using the sticks each day even if her therapist doesn’t completely agree, and I don’t know if she does but she will read this anyway (LOL!!)? Hell yeah! I don’t want to get into a therapy battle, and I’m not talking about between me and the therapist…God, I love her therapist…but I mean, practicing movements that could be opposite of what we are trying to accomplish with proper positioning and therefore further stalling progress (with that “progress” being PROPER independent walking).

I have to say though, this has been quite the confidence boost for N…for all of us. She WANTS to not just do it, but do it right, pushing through her heels and extending her legs and back the way we’ve been working on in therapy. The motivational component is key to her success…to anyone’s success. She needs not just to be motivated but with the right goals in mind, not just walking but walking in a way that will get her to be able to run outside with her friends, to dance, and to be able to do all these things for many, many decades. This most recent success only confirms to me that we have made the right decision in our approach to N’s therapy. I see her walking using the sticks for limited balance assistance, very soon. I also think that before the school year is over, she is going to stand up and take some steps from her chair at school with or without permission…so if we want her to do it with the proper alignment, we best bust our butts to get her to that point because when she’s ready to walk, she’s gonna do it and not one of us will stop her…I wouldn’t even want to try.