Ordering new equipment for Ben had been a fairly easy process in the past - contact a medical supply salesman to do a fitting and then a few months later, the delivery was made. Something happened with our past sales person, and Ben was neglected for the past year. For almost a year, Ben sat in a Convaid wheelchair that was way too small for him. Medicaid requires that you keep equipment for at least three years before ordering new, but had we known about this caveat - if the child grows quickly and cannot use it safely, then a doctor's letter will help get the equipment ordered before the three years, we would have pursued it. Ben's former Convaid chair was a 14" chair and Ben's hips were 14". Clearly, he was too large. His feet touched the ground, and he could almost stand up with it. The past salesman's family-run company was bought out by a large corporation with strict policies and goals. It is possible that this was the reason for the salesman's
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.