We’re Excited About My Son’s New Adaptive Equipment

A new stander and wheelchair have arrived for this columnist's 4-year-old son

Keara Engle avatar

by Keara Engle |

Share this article:

Share article via email
main graphic for the column

Awhile back, I donated my 4-year-old son Cayden’s used adaptive equipment. He’d outgrown his old stander, so we no longer had any use for it. While I was sad to see these things go — because it’s a reminder that he is getting older and bigger — I was also thankful that I could pass on his equipment to families who needed it.

After we got rid of Cayden’s old equipment, his physical therapist started the process of ordering him a new stander and a wheelchair. The stander is something he’s used to, but the wheelchair — which is more like a special needs stroller — is entirely new for us.

Before this, we used a normal, toddler-sized stroller for Cayden, but he was getting way too big for it. We also wanted to make sure he had an actual wheelchair for when he starts school this fall. I worried that with the toddler stroller, other kids would view Cayden as a baby, which I didn’t want him to experience.

Recommended Reading
Banner for Dwayne M Wilson's column,

Newborn Screening for Pompe Has Changed the Playing Field

They’re here!

The stander and the wheelchair have finally arrived. Cayden was a bit nervous to try out his new stander. The purpose of it is to have him stretched out and upright, distributing the weight through his legs. Since he can’t do this on his own, due to the severe muscle weakness that is a symptom of his infantile-onset Pompe disease, the stander is necessary to get him into this position as comfortably as possible.

He did cry when we initially got him into the stander, and he said that his legs hurt. But we started him out with just a few minutes in it at a time, and then increased for up to 30 minutes at a time.

Cayden was ecstatic when his brand-new wheelchair arrived. I wasn’t sure if he’d like it. It’s much different from the toddler-sized stroller that he’s been using for so long. But thankfully, he absolutely loves it! He got to pick out its color, and to my surprise, he chose blue instead of red, which he claims is his favorite color.

The wheelchair has a nice seat cushion and a tilt feature so that his body can distribute pressure in different areas. Both of these features are important because they help prevent painful pressure sores. Another cool feature is the removable tray, which allows him to use his iPad to help engage in conversation whenever we can’t understand what he’s saying. He also likes to use the tray to color and play with some of his favorite toys.

I never knew that getting new equipment could be so exciting until the day came. But seeing how much Cayden has been enjoying his new equipment brings a smile to my face!

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


Leave a comment

Fill in the required fields to post. Your email address will not be published.