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Mom's Boot Camp 

(Late July-Early August) 

More right arm strength was returning. Matt could shrug his shoulder, pull his shoulder blade in, and contract the deltoid and triceps muscles to lower his arm and extend his elbow. We integrated both hands into activities—requiring each to attend to their corresponding side, such as washing his face, pulling up his pants, using a knife and fork, or picking up objects—no free ride for the right arm. After his morning care, as a finishing touch, he preened in the mirror to ensure he had done an acceptable job brushing his hair and rubbed his chin for smoothness. 

Inconsistent arm spasticity interfered with the ability to open and close his right hand, and sometimes, it became a death grip that wouldn’t let go of the razor or hairbrush. In those moments, Matt expressed frustration—using a few words and gestures—about his struggle to use his right side. I was mindful of the effort required to talk and careful not to overdo it or to discredit his feelings. I tried to help him see that he could do more now than a week ago, but I understood he was comparing his right side to his left and what he could do before this happened. To lift his spirits, I redirected his attention to things that were improving: the piano and perfecting our dance pose, beating people in thumb wars with his right hand, and playing games of Sorry. 

We frequented the therapy gym, spreading out on a therapy table to work on rolling, bridges, leg raises, and snow angels, and we threw in weights whenever appropriate. We practiced rising from a chair with less assistance and stood in the parallel bars. If I was alone, I didn’t dare walk him the length of the bars without the security that if trouble arose, someone would run to my aid or scoop him up in the wheelchair. Soon enough, as skills and confidence increased, Matt and I did walk the length of the bars, side-stepped one way and then the other, or attempted to step backward—which was particularly difficult. By the second half of July, Matt and I walked with the platform walker. He focused on moving the walker, standing tall, and extending his knees. Twice, we walked 25 feet.

Physical Therapy stayed one step ahead of us. They transitioned to a one-arm platform walker for the right arm while the left arm was extended. A week later, in the therapy room—with Megan’s help guiding the walker and supporting his right-hand grip—we followed suit and escorted Matt 30 feet. We were pleased to see his posture was more erect and that he straightened the left knee more often. I continued to help slide the right leg forward. It was a workout. Although the physical therapist’s next move was walking with a regular walker, we didn’t try that one.

Time was running short for Matt to master walking with the regular walker well enough to manage at home without needing to use a more cumbersome device or a wheelchair. In my mind, Matt needed to use a regular walker to get in and out of the bathroom and somewhat around the house with our assistance. To accomplish this stretch goal, sustained momentum, hard work, and practice were required.