“Rayne’s care team is huge,” says Tasha Wilburn of her toddler daughter. “And she’s pushing herself, too.”
Tasha Wilburn’s two older children received Early Intervention (EI) services for speech therapy from the Cuyahoga County Board of Developmental Disabilities (Cuyahoga DD). “We became familiar with the process because of my eldest child,” she said.
“With Rayne, it was very different,” Wilburn says. “A birth injury caused severe nerve damage in her right arm. She was diagnosed with Erb’s palsy. She only had sensation in two of her fingers and less than 10-percent overall mobility.”
Rayne underwent complex reconstructive surgeries at six months old and again at one year old to restore nerve function and improve mobility in her arm.
“Rayne’s first procedure lasted six hours, then eight for her second one,” her mom says.
After two surgeries, therapy two to three times per week, weekly playgroups, and daily stretches at home, Rayne has made remarkable progress.
“She started with less than 10-percent mobility,” Wilburn says. “Now she’s at about 70 percent. Every week she’s doing something she couldn’t the week before. We are hoping to get her right arm mobility to over 85 percent.”
Wilburn also focuses on helping her older children understand and support their sister. Instead of focusing on limitations, they talk about encouragement and resilience.
From those conversations, her daughter came up with the idea of writing a book about her sister’s arm, which became Rayne Climbs Up. They began calling her right arm “rainbow arm,” a name they now use even in therapy or when Tasha notices she doesn’t want to use it.
“It can be heartbreaking, but it’s important to take a step back and let them find their independence and figure it out. Give them encouragement that they have inner strength. They just have to push for it.”
Cuyahoga DD reached out right away to see what additional support they could provide. Along with therapy services, they sent an occupational therapist to the family’s home to work with Rayne. They also helped the family secure grants that covered medical equipment and extra-curricular activities to support fine motor skill development and assisted in finding additional insurance coverage during gaps in care.
“It’s been very helpful to find all the resources through Cuyahoga DD and get her seen,” Tasha says.
These days, Rayne is doing great and has sensation in all her fingers. And “Rayne Climbs Up “is nearing publication: learn more at tashalwilburn.com/raynesrainbows.
“If you build resilience early, that will help children through life, navigating things on their own,” Tasha said. “I think the book was for me more than anyone. To show that Rayne is making it through, happy, enjoying life and able to climb.”
