We began sending videos of Grayden documenting how he moved to Dr Jordan so that he could help guide us regarding when/if bracing was necessary for Grayden. Each time we sent him videos he would carefully analyze them by breaking them down frame by frame and would call/write to us to explain his thoughts. We had yet to experience a doctor who so thoroughly examined Grayden's true functioning. The local doctors seemed to take a quick look at his outward appearances and his intoeing and based on a 5-10 minute exam, would make quick decisions that we felt were based on what they "typically do for kids with SB who present like Gray", rather than truly looking at his function. I remember once going to the local doctor in Grand Rapids at MFB and them asking to see how Grayden was walking. At the time, Grayden was using a push toy to help him walk and I had forgotten to bring it. The doctor gave him a stool on wheels and asked him to walk, even after I said that it would not be a good representation of what he could do, nor did I believe it would give a clear idea of his function, but the doctor preceded and then based on what was observed there were recommendations made. It was recommended that Grayden wear AFOs (ankle foot orthoses) with a twister cable to help turn his feet out. We were told that by allowing him to walk the way he was that we were causing damage to him that would need to be surgically corrected later. We were told that he had tibial torsion that would need to be surgically coreccted by breaking his bones and turning them. Yet still, my instinct told me not to listen. When I asked to see research that supported the use of the twister cables, no one could produce any for me. All that I found in my own search were 2 outdated articles done in the 70s on kids who had CP. When we asked Dr Jordan for guidance he told us that he would absolutely recommend against the use of the cables because in fact they could cause harm to Grayden at the knee joint. He also said that they pull the leg outward but it is done passively and they don't help to teach the muscle anything. So, we filled the script and got the cables and AFOS from the local orthotist (for fear I would be turned into CPS if I didn't), but never actually had Gray use them. We also switched to new doctors in Ann Arbor who were more in line with us and our thinking and agreed with what we shared regarding Dr Jordan and his recommendations.
We continued to send Dr Jordan videos every six to eight months and made our first trip to see him when Grayden was around 30 months on our way back from Philly. Dr Jordan spent three hours with us that day, closely observing Grayden's movements while he played between the waiting room and his office. Taking time to see him move in all different ways. He spent a lot of time talking to us and describing what he was observing. Dr Jordan did not believe that Grayden had true tibial torsion and showed us exactly why not. He described in detail the ins and outs of how/why Grayden moves the way he does. We left that appointment with a recommendation to continue to allow Grayden to grow and develop without the use of braces and to continue to send video. So, that is what we did. We continued to allow Grayden to grow and learn meanwhile continuing with ABM lessons. And that he did! He has grown and he has changed!
This summer we began talking more to Grayden about Spina Bifida to help give him an understanding about what that means for him and to give him the language to answer questions when people get curious. During our discussions he started asking us about bracing for his feet and if there was something we could get to help his legs turn straight. I contacted Dr. Jordan to let him know that Grayden was asking and to see if he felt it was time for another in person evaluation. He agreed that it may be time to see him again so we called and scheduled.
So, here we are today with our first true set of AFOs and elastic straps. So, why now you may be wondering? What makes him "ready" now? And so here is my attempt to explain the brilliant mind that is Dr. Jordan and what he explained to us. I should also add, another really great thing about Dr Jordan is that he does not just recommend braces and send a script to another office to fill, he works very closely with his orthotist in his very own office to design and create them and is there when you pick them up to ensure they look and fit the way that he envisioned.
So here is my attempt at explaining and summarizing, although there is a lot more detail to it.....(you would think bc I'm an OT that I would totally grasp all of this....I'm forever a student:))
Both the hamstrings and the glutes extend the hip and bring it forward. The hamstrings extend and internally rotate and the glutes extend and externally rotate the hip. We will use the elastic straps as a sensory component to help encourage Grayden to activate his glutes instead of using his hamstrings so much. We are not trying to force the muscles out, rather the straps will put tension on the muscles that internally rotate to say "slow it down, okay, you've got this other muscle, now use it". Around the age of 5-6 the spinal cord matures and the last bit of peripheral fibers are sent to the glutes, so if we would have tried this when he was three it may have looked good but there would have been little benefit because he would not have had the nerve supply needed to that muscle. So again, the straps will help provide a Sensory feedback, they will not force, but rather create stability and resistance to slow the movement down to illicit the use of the glutes. The AFO will provide a better landing for when he steps. Kids can still work around the straps so we don't know what Grayden will do with them. Only time will tell.
On the first trial in the office, Grayden did not like the straps and AFOs. It is a new variation of movement that he is not used to. Dr Jordan said it will be like stepping off a boat when he takes them off or puts them on. He will have to readjust to the feeling of how to move. The elastics will be used as a training tool and are not meant to be worn all of the time. Wish us luck as we figure out how and when to use them and as we encourage Grayden to explore this new variation!