Caydens' Myotonic Dystrophy Journey
Ankle Foot Orthosis (AFO)
Cayden has a pair of Ankle Foot Orthosis. I call them “boots”. When Cayden was born his toes were very pointed downward. This foot position obviously will cause problems with him learning how to walk. About 3 days after Cayden was born the Pediatric Rehab Team came to assess him and provided us with physiotherapy exercises to do on his feet and hips. We still do these exercises to this day, trying to stretch out his feet and get them into a 90 degree angle which is more functional for walking.
We were referred to an orthopedic surgeon at The Rehabiliation Centre for Children in Winnipeg for this problem. Cayden was casted for AFOs while we were there. They are to stretch his feet, to keep a good range of motion in his joints and to help keep his feet in the right position. The hope was that they would straighten out on their own with the added support and continued use of the AFOs. In September 2017 Cayden had heel cord lengthening surgery to ease the stretching in the hopes that it will make things more comfortable for him to attempt weight bearing and walking. He must continue to use the AFO’s but we are seeing an improvement when he is in his assistive devices.
Cayden has a pommel walker. It is quite a large piece of mobility equipment with wheels on the bottom. There is a seat that he straddles with his legs. This seat supports the majority of his weight and allows his feet to be manually positioned on the floor for him to try to walk by pushing with his feet. Cayden usually cries when he is put in the walker as he doesn’t like it very much. However, it has a large tray attached to the front of it which I can use to put toys, books or snacks on it. That sometimes helps the situation and distracts him from what’s going on. Physiotherapy has recommended that he should use his walker at least once a day. I usually put him in it when I am in the kitchen cleaning or doing the dishes. At this time, Cayden hasn’t really figured out what to do even though we have helped him move many times by moving his feet with our hands to make him realize he can make himself move on his own. He usually just kind of hangs out in there and plays with his toys. The pommel walker was provided for us by The Rehabilitation Centre for Children in Winnipeg.
Cayden also has a stander. It is a large device in which we secure him into it and it forces him to bear weight and stand upright. It is very important that he is upright for a little bit each day. The stander was provided to us by The Rehabilitation Centre for Children in Winnipeg.
In April 2017 we tried out a Freedom Concepts modified tricycle at the SCCY building in Winnipeg. Cayden loved it so much that we posted the video and within a month Muscular Dystrophy Canada contacted us saying that that had one available from a grant they received! He rides it almost every day (weather permitting) and we are hoping to get a gym membership this fall/winter so that Cayden can continue riding as it is great therapy for him! The tricycle was provided to us by Muscular Dystrophy Canada