Therapy aids Olivia’s quest

Girl, 6, with cerebral palsy wants to climb like them, run like them, be like them

By Scott Hewitt, Columbian Arts & Features Reporter

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Inline - Therapy aids Olivia's quest

To learn more

Contact Innovative Services NW at 360-892-5142 or visit <a href="http://www.innovativeservicesnw.org/Intensive-Therapy.php">http://www.innovativeservicesnw.org/Intensive-Therapy.php</a>

To learn more

Contact Innovative Services NW at 360-892-5142 or visit http://www.innovativeservicesnw.org/Intensive-Therapy.php

When Olivia Hughes wasn’t quite 2 years old, a physical therapists’s suspicions about her were confirmed: cerebral palsy. She’d been born prematurely, and her brand-new brain didn’t get all the oxygen it needed. There haven’t been noticeable intellectual delays, her mother Carly Hughes said, but the physical effects — especially on her legs — have been profound.

Olivia’s legs are weak and inflexible. Her core strength is weak too. Standing up straight used to be impossible. The farthest independent journey Olivia used to be able to manage was four steps. Then she’d fall down, her mother said.

But after her first Intensive Physical Therapy session at Innovative Services NW, 6-year-old Olivia was able to take 20 independent steps. Now, a few months into the regimen, she’s built up to 40. The promise of a new “Frozen” movie-themed Barbie doll provided some incentive for all that striving, Carly admitted — but walking independently has proved its own reward. “You should have heard the joyful screams” when Olivia counted 40 independent steps, Carly said.

Olivia is “getting to the age where she notices” how different from her peers she is, Carly said. “I want to be like them, I want to run like them, I want to climb like them” is what Carly has been hearing.

It may or may not be possible. But Innovative Services NW’s new pediatric Intensive Physical Therapy program is now helping kids like Olivia, who have serious neuromuscular issues, retrain their bodies and their brains in much faster fashion then ever before.

What’s so intensive about it? It’s three hours a day, five days a week, for three to four weeks, with possible repeats of the whole sequence after a break of a couple months. It’s one-on-one time with a specially trained therapist who’s using state-of-the-art equipment that Innovative was able to purchase thanks only to grants from several local philanthropists and foundations.

That state-of-the-art equipment includes what’s called a TheraSuit and a Universal Exercise Unit. The TheraSuit, a complex and awkward-looking assemblage of straps and weights, is soft and comfortable while adding pounds and strategic, targeted pressure to muscles and joints. The weight and pressure stimulates those muscles and counteracts reflexes, ultimately retraining the brain and stoking up the vestibular system, which processes vast amounts of sensory information and controls movement and balance. The vestibular system has everything to do with the body’s self-awareness — its momentum and place in space. The TheraSuit also makes it easier and less uncomfortable for physical therapist Denise Wentzel to stretch and work Olivia’s body manually.

And the Universal Exercise Unit, a metal lattice the size of a walk-in closet, features bungee-cord supports that help the child maintain posture and practice upright skills like jumping, reaching and balancing on one foot that would have been impossible otherwise. As the muscles strengthen and the brain sharpens, the external bungee-cord support can be reduced.

Brain retraining

Retraining the muscles and the brain and rehearsing skills like jumping and balancing is cumulative work, therapist Denise Wentzel said. She pointed out that the cutting edge in brain science these days is “plasticity,” that is, the idea that the brain is always growing and changing and is imminently retrainable and adaptable — especially, but not only, at a young age. That’s a promising development for kids such as Olivia.

“I see her as leading a pretty normal life,” said Wentzel — who loves telling tales of people who successfully retrained their brains and bodies after accidents, injuries or inborn disabilities. Carly expects Olivia always to need certain accommodations — but also expects her to go much further and live much better than people with cerebral palsy used to be able to do.

Columbian readers may remember a story from 2013 featuring Mason Nelson, who was diagnosed with Angelman Syndrome, a rare genetic disorder that results in severe developmental delays and other problems. Last summer, 4-year-old Mason was getting around by clinging to furniture the way a toddler does. But Mason has been doing Intensive Physical Therapy at Innovative, Wentzel reported, and these days he’s begun waddling around on his own.

Families always get information and personalized, detailed instructions for continuing the intensive work at home, Wentzel said. Carly, who used to work as a dental hygienist, said being the mother of a child with cerebral palsy is “a full-time job.”

Pricey therapy

The Hughes family lives in Battle Ground and came to Innovative, which is right beside the Westfield Vancouver mall, for physical therapy until Olivia was 3 years old. Then they pursued Intensive Physical Therapy — which meant driving every day to a clinic in Portland. Now the family is back with Innovative and glad not to be headed back and forth over the river every day.

Innovative, of course, is glad not to lose young clients it’s worked with. It’s spreading the word not just among its current clients but also among pediatricians and other professionals that could send clients its way.

Innovative’s vice president of development and marketing, Kathy Deschner, said this labor-intensive, equipment-intensive, personally customized therapy is pricey indeed, and not always adequately covered by insurance. It simply isn’t available to everyone yet, she said. The Hughes family has good Blue Cross Blue Shield coverage, Carly Hughes said, but they’ve also applied for foundation grants for other assistance and equipment that their insurance won’t approve.

Innovative has no way of prorating the cost or granting scholarships, Deschner said. The multifaceted nonprofit agency has numerous programs and numerous funding streams, including contracts with the state, but no public money is involved in this particular program, she said. A best-case scenario would be donations to an endowment fund that would extend the program to underinsured or uninsured people, she said.

“We can’t offer intensive therapy without the resources,” she said. “We’re just not in that position.”