A few weeks after casting Ben's AFOs , we visited Steve again for a fitting. The AFOs are completed, but still need adjustments. A small boot was fitted over Ben's special long socks. The top of the boot was softer than the ones he had in the past. It was rubbery. The rest of it was a hard plastic. A very soft tongue was glued inside of the boot to make sure that nothing hard rubbed against Ben's foot. This was new for us. Typically, we had the tongue, but it was detached and we were forever losing them and yelling for someone to find a pringle for Ben's brace - that's what we call the tongues, "pringles". The extra length on the orthotic is trimmed off by Steve on site. After the boot, a hard plastic orthotic was put on. This held the straps that keep the AFO in place. This time, Steve decreased the straps from three to two. The change in strap number and glued in tongue made putting on AFOs faster and easier. As
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.