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Kyle, 12

Richmond | Services: Transitional Care Unit

On the Move

Twelve-year-old Kyle Jenkins has been a resident of the Transitional Care Unit (TCU) at Children’s Hospital of Richmond (CHoR) for almost two years, where he enjoys attending school, singing and playing instruments during music therapy, and going on field trips every Friday.

Kyle, who has a rare inherited muscle disorder called Schwartz-Jampel Syndrome, uses a feeding tube, ventilator, and wheelchair, and he has recently started working with a physical therapist to learn how to stand with a walker.

“We found the Transitional Care Unit when we were told Kyle needed to be put on a ventilator,” says Michelle, Kyle’s mother. “It was a very difficult transition, but it has gotten easier. I have phone numbers for other patients’ mothers. We all stay connected.”

Recreation therapy, a program that brings activities and outings to the children in the hospital’s long-term care unit, is an important part of Kyle’s daily routine, giving him the chance to improve physical abilities, reinforce social skills, and experience typical childhood activities.

“When Kyle first came to us,” says Erin Cramer, CTRS, Recreation Therapist at CHoR, “he was very anxious, and he didn’t want to participate in many activities.”

Over time, Kyle became more comfortable at the hospital, and he made close friends with other children who live on the TCU, including his roommate. Most days, no matter what the weather is like outside, Kyle can be heard telling everyone around him “let’s go outside.”

Even though Kyle doesn’t live at home anymore, Michelle is proud of all that she can still share with him. “We watch NASCAR and football as much as we can,” she says. “Kyle also loves music. He gets that from me. We sing together a lot.”

“He sings karaoke every chance he gets,” Erin says. “Right now, he is obsessed with High School Musical.”

The Recreation Therapy team members provide daily activities at the hospital, but they also take the children out into the community for weekly field trips. Recently, Kyle and the other TCU residents participated in the week-long hospital summer camp, Camp W.A.V.E.S. (Wheeling Around Virginia Enjoying Summer), where he went horseback riding and swam at the Great Wolf Lodge, among other activities. The annual trip to Virginia Beach is also always a big hit.

“We had a lot of fun on the trip to the beach last year,” says Michelle. “Kyle got to dip his feet in the water, which was a wonderful experience for him.”

One of the goals of Recreation Therapy is to give the children at the hospital as many new experiences as possible, and Kyle has enjoyed most of the activities, but he hopes to avoid making any more paper mache. As he says, it is too “gooey.”

Michelle is thankful for the opportunities presented to her son, which he might not have elsewhere. “The staff is really great,” she says. “They get Kyle to do all kinds of new things, and I love to hear the excitement in his voice when he tells me about his day.”

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