NORTH PLATTE, NE—Three-year-old Bentley Hinrichs couldn’t get the physical therapy he needed anywhere in his home state of Nebraska, so instead he found it at Orange City Area Health System.
In March, Bentley and his parents, Chris and Tonya Hinrichs, and 5-year-old sister, Briawna, spent two weeks living out of a camper in Orange City while Bentley spent hours a day doing therapy with Monica Aalbers, a pediatric physical therapist with the health system.
Aalbers is one of a handful of physical therapists trained in the kind of therapy Bentley needs.
Bentley was born with a rare brain disorder called pachygyria, a condition that causes him to have uneven muscle tone throughout his body.
Because of his uneven muscle strength, Bentley is nonverbal and has significant mobility issues. His arms and legs have increased tone, which means the muscles there are constantly extended and resistant to movement, while his core has decreased tone, making it hard for him to sit up and keep his balance.
To help him build strength and learn to control his muscles, Bentley has regular physical therapy but has made his biggest gains through intensive physical therapy sessions. These sessions last two to three hours, five days a week for two to three weeks.
Because of his unique physical limitations, Bentley uses a therapy tool called the TheraSuit. The canvas suit has hooks and straps that can be attached with bungee cords to provide resistance to specific muscle groups. This helps therapists isolate areas to focus on, or provides stability and support.
TheraSuit therapy is used all over the world, but clinics that have physical therapists trained in the methods are few and far between. Aalbers said she only knows of two places in Iowa that offer this service, one of them being Orange City Area Health System.
“That’s what a lot of people are surprised by,” Aalbers said. “This is usually something you’d find in a bigger city, but it does work in small-town Iowa out in the middle of nowhere.”
Before coming to Orange City, the Hinrichses did three weeks of intensive therapy at the NAPA Center in Los Angeles in August, but when Tonya tried to schedule another session, they were wait-listed. However, Bentley’s regular physical therapist saw the improvements he made in those three weeks and encouraged the Hinrichses to look for another intensive therapy option.
This was when they were introduced to the TheraSuit, which was similar to a device they had used at the NAPA Center. However, there were no centers in Nebraska that offered TheraSuit intensive therapy programs for children. Their closest options were Iowa, Missouri and Michigan.
“We were getting frustrated because we couldn’t find places to take our son to help him get better close to home,” Chris said. “It was just kind of nice to just go a state away instead of five states away and get therapy that he needed.”
Aalbers designs intensive therapy sessions around parent and patient goals. For the Hinrichses, that meant helping Bentley be more independent in feeding and playing. Through a combination of physical therapy sessions with Aalbers and occupational therapy with Libby Van Bruggen and Ashley Musch, Bentley made major strides in just two weeks.
During therapy, Bentley was able to sit unassisted for 76 seconds, a personal record.
He also made progress in being able to hold and release objects, drink from a straw and initiate standing with assistance.
“We’re getting there,” Chris said. “It’s just going to be more of these intense therapies that we did in Orange City and a daily routine with him.”
According to Aalbers, the concentrated repetition of intensive therapy helps patients make progress more rapidly than traditional methods, where patients have less than an hour of therapy once per week. The Hinrichses have seen that pay off with Bentley.
“They say three weeks of intensive sessions can make a child gain more than one year of once-per-week therapy. I feel like that’s very true, especially with Bentley,” Tonya said. “My motto for Bentley is he can be the most successful he can be in life. No one can tell us what that will be.”
Doing intensive therapy is a big-time commitment. Cost is another factor, as many types of insurance do not cover it. Although its only one of many physical therapy options Orange City Area Health System offers, Aalbers said interest in it is growing and parents like the Hinrichses show up ready to work hard.
“They came prepared and they worked as hard as he did just trying to encourage him to make the most out of the therapy sessions,” Aalbers said. “We have so many parents who are so supportive and that helps a ton.”
During those two weeks of therapy, Aalbers trained Chris and Tonya to use the TheraSuit at home during Bentley’s weekly physical therapy sessions and their regular exercises with him.
The Hinrichses hope to do intensive physical therapy a few times a year, which will likely include at least one visit back to Orange City per year.
“If a small town of 6,000 people can offer this, I don’t see how or why no one in Nebraska is,” Tonya said. “It’s amazing what such a small town has to offer for kids.”