Standing tall
Last week I shared a photo in my personal Instagram account of making crafts with JB to distract him during his time in his stander. I received several questions afterward, and realized I never mentioned his stander before on the blog, so I’d like to do that in today’s post.
As I’ve mentioned before, one effect of JB’s genetic syndrome is hypotonia, or low muscle tone. (Not-so-fun fact: Another phrase for hypotonia is “floppy baby syndrome”, joining my previous least-favorite medical terms of “geriatric pregnancy” and “failure to thrive”.) JB’s muscles don’t provide the resistance a “normal” child’s would. Here’s an awesome demonstration highlighting the differences among typical muscle tone, low tone and high tone.
JB’s hypotonia has made it difficult for him to learn to sit, crawl, stand or walk. While we are working on these skills piece by piece, it’s also important that he start experiencing some of the benefits of standing throughout the day – specifically so his legs can start bearing weight. This is where the stander comes into play.
We first applied for JB’s stander back in August when we also applied for his adaptive stroller/wheelchair. His team of therapists and doctors wrote their letters of support for insurance, and we worked with a medical supply company to find the best option for JB’s situation.
The good news is that by starting him in a stander at such a young age, he’ll get lots of use out of the equipment. It should last him a few years, even if he has several growth spurts!
The goal is to increase gradually the amount of time he’s in the stander. He started at 15 minutes a day, and now can go up to almost an hour a day, if he’s well rested. It’s hard work, as his body is using parts it never has until now. It helps if we keep him distracted. Luckily, the stander has a tray, so he can play with cars or blocks while in there. His favorite activities are throwing things off the tray and complaining because he wants us to pick them up. He also enjoys watching Sesame Street while in the stander – either on TV or his iPad, although he often just throws the iPad, too.
In true JB fashion, he quickly (we are talking five minutes in) learned how to wiggle his feet out of the stander, so his sneakers stay strapped in and he can kick and dance. Yes, this defeats the purpose. Yes, he still occasionally tries this maneuver. Luckily, the stander has brakes on it (similar to those on a stroller) to keep it in place when he does this.
We have already noticed big improvements since getting the stander. His head control, trunk control, legs, and digestive system (which is lined with muscles) are all getting stronger.
I have found I’m also getting a bit braver since we got the stander. Parents and therapists are responsible for everyday adjustments to the equipment; there’s a giant instruction manual PDF and a tool (that looks like a mix of that IKEA tool and a Swiss army knife on steroids) to make minor adjustments as he grows. I even lengthened the stander the other day, as his legs seem to get longer by the minute, I swear!
Well, those are the basics of JB’s stander. If you want to help families who can’t afford equipment for their children, here are some organizations doing a lot of good work: