Part 1: Birth to Using a Walker

My son, Jordan, was born with clubfeet, among other issues associated with SA/CRS. When he was only 9 days old, they started casting his feet. This first pair of casts was like a tape that could be peeled off. The second week, we switched to a different hospital that had more experience with kids with SA/CRS. They used fiberglass casts instead. After putting them on and letting them dry, they sawed through the sides of them and then attached them back together with Velcro. They also put material inside, Moleskin, that made the insides very soft against his newborn skin. With the Velcro on the sides of the casts, we were able to remove them a few times a day to check for sores or places the casts were rubbing against his feet or legs. We could also take them off to bathe him.

These first days of Jordan’s life were a whirlwind, and we also set up a consultation with Early Intervention within the first two weeks. He was assigned a physical therapist who came twice a week. We developed a great relationship with her. She massaged and stretched his legs and feet. We noticed that he moved both legs together. He never did a walking motion. So, we worked with him on that. With every diaper change, we moved his legs one by one in a walking motion. He eventually caught on and started to do this himself. I have since heard from many parents of kids with CRS that they had this same experience of only moving the legs together. It is definitely something that can be worked on.

We went back for cast changes every week. A few times we were able to skip a week and go every two weeks. In the meantime, we also saw several other specialists, so it was hard spending so much driving back and forth to the hospital, which is an hour’s drive each way.

The casting did work somewhat in stretching his feet, but they still were not in a great position, so the doctor thought he should do surgery. When Jordan was 7 months old, he had surgery on his feet.

At the time, Dr. Ponseti was still alive. He was the doctor who developed the technique for correcting club feet with casting, the method Jordan’s doctor was using. I emailed him, and his assistant responded. I wanted to know if casting worked for kids with CRS. The assistant said it did but that the feet often revert back. That is what we found to be true. The first surgery wasn’t a full success, so 8 months later, he had another surgery. This time they did one foot one month and the second foot a month later. They also worked on one of his knees, which was dislocated. His knee then became a lot straighter but also stiff. The other knee could bend a little bit.

Then he started wearing the Ponseti brace at night. This is two leather shoes connected with a metal bar in between. This is meant to hold the feet in the correct position. He wore it 23 hours a day for months and then started to wear it only overnight while sleeping. He even started standing in this, while holding onto something.

After this, he was able to start wearing HKAFOs (hip, knee, ankle, foot orthoses, or leg braces that go from the toes up to the hips). He had something like a belt around his waist and then the braces connected from that all the way down to and including his feet. When I first saw this device, I asked how he was going to be expected to walk in it or even move in it! No one gave me a good explanation, but I think that the point was for him to get up standing and to move on from there.

He did soon get the hip part of his braces taken off and was just in AFOs (ankle-foot orthoses, or braces from the toes to the knees). We then started working on walking with a walker. One of us would sit on a stool that had wheels on it and would move his legs for him, one by one, until he was taking steps. He then started walking on his own with the walker, at about 20 months old. It was very hard for him at first, as shown in this video of him learning to walk.

But he made a lot of progress very quickly and was soon basically running and dancing with his walker. Here he is dancing on the beach at age 2.

And here he is dancing around age 3.

Jordan used his walker all throughout preschool, although he was learning how to use his crutches. In the next part, I’ll describe how we helped him moved from the walker to crutches.