Ahh, the joys of fitting orthotics! Four hours out of the house and yet we still came home empty handed. Mason’s Hip Knee Ankle Foot Orthotics(HKAFO) were ready so this afternoon Emma, Mason, and Mommy drove 50 minutes to the office for fitting. It was Mason’s first long ride in his forward facing car seat – because he is a big one year old boy – and he loved it. He sits higher up so he can see out the windows and it is easier to play with a seatmate. Emma was elected the buddy today so she got to come along. For many of Mason’s appointments in the big city I take one of the older siblings along to play with Mason and get some mommy time. I had no idea just how long the process was going to be today. I thought we would show up, strap him in the braces, maybe adjust a bit of padding, and head home. In reality we were in the office for hours. You see, when you arrive for a fitting the HKAFOs still need some work. The plastic part for his feet is called the AFO. Those were not attached to the metal of the brace because we have to put Mason into the brace and get them to the exact length needed to fit him. (Ours were supposed to be decorated and weren’t. That’s going to be fixed because part of the plastic is also too thin for the support is has to do for Mason.)
Then the orthotist decided to added metal, leather, and velcro strapping around his thighs. These were custom made and riveted on while we waited (and waited….and waited…). After nearly 1 1/2 hours of work we were able to put Mason in the brace and stand him up. He hated it. But we are pretty sure we know why. See that leather and velcro belt around his belly? Well, when you turn around to see the back there is a metal band running behind his back with the rest of the leather belt. It happens to run right across this: Yes, that is Mason’s scar from where his spinal cord was sticking out of his back at birth. It has healed well but happens to be super sensitive to touch and pressure and the metal band was putting a lot of pressure right on the scar when he stood. Bad News!
We also discovered that Mason needs more support for his butt. In the braces the way they are his bum sticks out a bit like he’s getting ready to sit. His extensor muscles in his hips don’t work to help him tuck his butt under him to stand. We needed to adapt the bracing to include something to hold his bum in place.
We decided to go with a different back, one custom fit out of plastic similar to the AFOs. It will run from under his shoulder blades down his back and butt. This will spread the pressure out away from his scar at the same time that it supports his butt staying tucked. To make that piece we had to make a cast of Mason’s abdomen and back from chest to hips. We did that today too. It’s a messy process and Mason was not impressed. They will use that to make a mold for the back plate Mason needs.
Of course all of that work means we had to leave the HKAFOs with the orthotist today. He’ll get all our custom parts ready and we’ll come back for a fitting in a few weeks. Hopefully we’ll get to bring the braces home next time!