I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.
I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.
For years, we’d struggled to help Sol learn how to take reciprocal steps. When he started in a gait trainer at 13 months old, he fought spasticity and dystonia so much that he couldn’t break his tone to move his legs: it was even hard for us to move his legs for him. (Here’s an example of his lack-of-movement prior to SPML, at the age of 2 1/2.) Once he’d had SPML and later SDR, he could move his legs reciprocally for short spurts, even learning to propel a gait trainer on his own. But getting him to walk farther and for longer took a lot of physical effort on everyone’s part and unless he had a physical therapy appointment, the longest we were able to help him in the gait trainer before tiring ourselves out was about 30 minutes per day, and even then, he’d get only 50 or so steps in.
So, now you’ll understand why I was so excited when I read about the Trexo: Trexo is a robotic walking system that fits into a gait trainer – specifically a Rifton Dynamic Pacer – and patterns the user through the motions of walking. It is run entirely on an app where you can control how many steps the device goes per minute, the range of motion, and, to some extent, how much weight bearing occurs. The app tracks the length of each session, how many steps were taken, what percentage of time the child initiates a step, and how much weight the child bears on average. In essence, it’s a second set of hands for a parent, allowing more freedom for the child to move around, and because it generally moves the body through more steps per minute than would otherwise be possible, it helps form new pathways and neural connections that can be seen outside of the Trexo.
Back to that initial Instagram post I saw in the Fall of 2018. I’m fairly certain that in the middle of the night, I – quite enthusiastically – emailed the Trexo team with a quick history about Solly’s diagnosis, inquiring where we could travel to trial a Trexo. The next day, Dina, Trexo’s COO, called me and told me about a Trexo Home program they were rolling out in 2019 where the devices would be available for in-home use, by lease or by purchase. I signed up.
Because our schedule was all over the place in 2019 with several therapy intensives, two surgeries, and a move across country, we waited until December for our device. Since then, we’ve used it non-stop, aiming to get walks in 5 times a week. We started out slow, using it for 5 minutes at a time, but now, four months later, Solly goes for 20 – 25 minute walks. He takes roughly 1000 steps per session, initiates steps about 25% of the time, and bears 75% of his own weight. Because the outdoors are highly motivating to Solly, we recently decided to primarily use our Trexo outside (year-round sunshine and warm temps are a huge perk to living in Los Angeles), keeping it in the garage, which is detached from our home. To get some extra steps in, we help Solly walk to get to his Trexo – about 80 – 100 steps – and then again walk back to the house once he’s done. He easily takes reciprocal steps, covering the ground much more quickly than in our pre-Trexo days.
Trexo has allowed Solly to become more comfortable in his body, making him more aware of where it is in space and giving him confidence in his abilities. In just 4 months, we’ve noticed carryover from his time in the Trexo to his therapies and day-to-day activities, from activating his legs in his adaptive tricycle to taking more independent steps in his gait trainer to walking with assistance at home and during therapy. To date, he’s taken over 37,000 steps in the Trexo and we’re excited to see how continued use in the device will continue to translate to his life outside the Trexo.