Kiley Griggs was exercising in a session of intensive therapy, and the mantra of the moment was “up.”
It was the final session of Kiley’s 15-day TheraSuit therapy regimen in Largo. Kiley wore a suit fit with elastic cords Wednesday, Nov. 23, and exercised her abdominal muscles as she sat with a physical therapist on a blue piece of equipment.
Kiley, who recently turned 3, has cerebral palsy.
Her parents, Jason “Jay” and Lori Griggs— a teacher at Rushe Middle School in Land O' Lakes— enrolled her in TheraSuit at Lampert's Therapy Group in Largo in October. TheraSuit is a therapy program for patients with cerebral palsy and other neurological disorders.
The Griggs are paying for it with money from an online cost they won recently.
As part of her exercise Wednesday, Kiley slumped over and was expected to pull herself up into a sitting position. Then, she was expected to do it again and again.
“Up!” therapist Karey Garrand repeated several times in succession. Kiley did, too.
“You stuck? You better pull yourself up,” Garrand said.
“I’m going to touch your cheek,” Kiley said to Garrand at one point.
“When we get to 15, you can,” Garrand responded.
As she neared her third birthday in October, Kiley lacked the ability to walk, crawl or sit up unassisted.
Kiley’s parents’ dream is for Kiley to walk. She wants it too, they say.
The dream was entered this summer into the UPromise Dream Wall Sweepstakes
The Griggs' dream
Kiley still could not walk or take a step without the help of a person or piece of equipment after she finished her 15th day of therapy.
But there has been improvement, say her parents, who live with her in a subdivision near New Port Richey.
She’s sitting up much better, said Lori Griggs.
She can't rise to a sitting position unassisted when she's lying flat, but when she is already sitting up, she's maintaining the position better.
She’s holding her head straighter, Lori said. She’s bending her knees, she said. She’s walking farther in her gait trainer, she said.
There hasn’t been a lot of change in function.
“Just lots of strength,” said Jason Griggs, a firefighter for the City of Dunedin. “Pure strength.”
Kiley's parents say they haven’t seen the last of what TheraSuit can do. They are planning to have her complete another regimen of the therapy in March and are hoping for another in summer.
The Griggs entered the UPromise Contest with the plan to use their winnings for TheraSuit. Their insurance won't pay for the therapy.
Government deductions are made from the UPromise prize, so they'll actually have less than $10,000 in usable winnings. They'll be able to pay for all of the March regimen and most of the summer therapy with the money, but the Griggs will have to do some type of fundraising once the contest money is exhausted and to fund future therapy.
The dream of walking has not been realized yet, Lori Griggs said.
"We want her to be as independent as possible," she wrote in an email. "If that means walking with a walker that is fine, but we want her to be able to d0 it by herself which she is not able to do yet.
"...I know it's going to be a lot of work for our little girl but I also see in her the determination to make it happen. ...We don't look at the future too much in our home. We focus on what we have at the moment and how to make it better."
TheraSuit, which Kiley started Oct. 31, retrains the nervous system, normalizes muscle tone, corrects gait and improves balance, strength and bone density.
The outfit worn during TheraSuit is equipped with elastic cords meant to provide support and mimic muscle movement. A component has the patient lying down in a “Universal Exercise Unit,” a cage-like structure, and exercising using a system of pulleys, straps and splints attached to the structure.
The exercise unit also is used for a “Spider Cage” therapy, in which a web of bungee cords attached to the patient's suit are hooked to the the cage to suspend the patient upright.
“She needs a strong core, so that’s what we’re tackling,” Garrand said.
Kiley named the cords on her suit “Meeko.” She liked to play with an extra cord during sessions. She likes the princesses from animated Disney movies, and she brought a Cinderella toy to Wednesday’s session.
Her parents rush in and out of the room trying to record the therapy and not be seen. She cried when they went to therapy with her.
"Up" is the constant command Garrand gives during exercises.
TheraSuit is meant to be done five days a week for three weeks. Kiley and Lori got sick on day 12, and she had to interrupt her sessions for three days. She made them up the following week to get to her 15–day total.
“She’s very motivated and wants to be able to move and do things,” Garrand said, “and I think that has really, really helped.”
Kiley will continue exercises at home after therapy, and her parents should see more change in the coming weeks as her body processes what she has learned, Garrand said.
One exercise that Kiley was challenged by was raising her body while she was on her hands and knees. She moaned at times while doing it on her last day. Garrand said she endures the exercise longer now than when she started.
Another exercise had her stand up against the wall. Sometimes Garrand supported her and corrected her head placement. Sometimes she briefly stood without support. In one instance, she fell.
”I’m good,” Kiley said. “I want to do it again.”