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May
In March and April we had been going to the clinic at the University of Michigan as many as three times a week. At the end of April and for part of May clinic visits were needed once a week. Then Dr. Castle told us we were officially on maintenance chemotherapy and would have to come to clinic only once every 28 days. Furthermore, she was recommending that Adam's medi-port be removed! He would no longer need it. There was no hurry to remove it and we could decide before any clinic visit to schedule the surgery.

By this time it seemed like the port had always been there. It was a part of Adam's life for 14 months at this point. It had been used many times. Having it taken out worried us. We both felt like a corollary of Murhpy's Law would kick in as soon as it was removed, and something would happen that would make us regret taking it out or that another port would even have to be put in. We decided not to remove it at the next clinic visit in June. It just seemed like we should see how things go for a while, now that intensification chemotherapy was over with and Adam was on maintenance.

One of the side effects of paralysis is a contraction of the muscles in the feet and toes. This causes the feet to drop and the toes to curl inward. There is also stiffness in the leg and trunk muscles, called "tone". Adam was experiencing all of this in ever-greater degrees as time went on. I was still doing lots of stretching and range of motion exercises every day, as well as the electrical stim on his legs. But the tone and stiffness kept increasing.

Adam was born with a clubbed foot on his right side. It had never bothered him while growing up. Now however, his right foot was getting more tone and stiffness than the left. Dr. Dabrowski, the Physiatrist, recommended that Adam go through serial casting on this foot. This involves stretching the foot into a normal position and casting it to hold that position. A week later the cast is removed and another one is put on with the foot stretched a little further. After several weeks of this Adam's foot would be in a normal position. Hopefully we would be able to keep it there with his AFO's.

Since January Adam had been wearing AFO's (ankle foot orthoses) on both feet. These are designed to hold his feet in the proper position and prevent permanent muscle contraction. Now Amy, the Physical Therapist, began serial casting with Adam. He went through several sessions of serial casting. For most of the summer he was in a cast. His only complaint was that he could not go swimming!

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