The shoes Ben is wearing are especially for use with AFOs. Every six months, Ben is allowed to receive new braces (ankle foot orthotics), shoes and socks through insurance and Medicaid. If for some reason his foot should grow too quickly in that amount of time, we could ask for special permission. We have not had to do that yet; luckily six seems like the magic number. After being cast, it takes about 2-3 weeks for the braces to be made. We use Level 4, a company that makes its own braces. Our orthotist, Steve, is involved throughout the process, to ensure Ben gets the best fit. This time, before we went in for casting, Ben visited an orthopedic surgeon. I wanted a new set of eyes on Ben's pronated feet, which seemed even more pronounced lately. The surgeon suggested Botox, something he did not do, but our neurologist certainly would do. After the trip to the neurologist and a very definite "no" about her office injecting the Botox, we were sent to a p h
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.