Hear Joe's story,
as featured on KS95 For Kids.
Joe's mom, Kristi, had no reason to suspect that the birth of her second child would go anything but smoothly. She experienced a healthy pregnancy and went into labor a week after her due date.
During labor, however, her baby's heart rate plummeted. After Joe was born, the care team discovered a knot in his umbilical cord. "We noticed immediately that he couldn't settle down," remembers Kristi. "One of his nurses remarked that he seemed to be shaking."
Diagnosed With Cerebral Palsy
Joe spent 10 days in the neonatal intensive care unit, where he underwent multiple tests. But it wasn't until he missed milestones during his first year that his care team began to officially suspect cerebral palsy-a condition in which brain damage causes abnormal muscle tone and problems with coordination and balance.
Joe received an official diagnosis of spastic quadriplegic cerebral palsy at Gillette Children's Specialty Healthcare, where he continues to receive comprehensive treatment. "Knowing that we have so much of what Joe needs in one place is amazing," says Kristi.
Supported by Comprehensive Care
Today, Joe receives extensive specialty services at Gillette. To help ease his muscle spasticity, he receives regular injections of botulinum toxin and phenol into his tight muscles. He also participates in physical, occupational and speech therapy to improve his strength, skills and speaking ability. "Those who know Joe well can understand his speech," Kristi says. "But at school and with people he doesn't know, he uses a DynaVox® computer to help with communication. It opens up a world of communication for him."
Joe's communication device is mounted directly onto his power wheelchair, customized by Gillette's seating specialists. "Because of Gillette, Joe has a specially designed wheelchair-and even a bike!" says Kristi. "His therapists also helped us order a special bed that ensures he won't fall out at night."
Encouraged to Be Independent
Kristi adds that Gillette's emphasis on independence has rubbed off on her son. Says Kristi, "At appointments, he's so comfortable and confident that he says, "Mom, you can stay out here. I'm going to go back by myself.' I love that!"
A philosophy of independence and inclusion has always been part of the Carr household, where big sister Eleanor, 12, treats Joe like any little brother. "Roughhousing, playing, bike rides-you name it," says Kristi. "Eleanor doesn't want her brother to miss out on anything. Gillette has always supported us in helping Joe participate in everything we do as a family."