Music drifts from within a care unit at The Children's Center Rehabilitation Hospital in Bethany, Oklahoma. "The mommies on the bus go shh, shh, shh ...." Sixteen-month-old Kaylee Edgar's eyes light up, and she smiles from her stroller wheelchair close to her mother, Tarah Edgar.
"She smiles every time," Edgar said, a smile on her face, too. "You like the momma on the bus, don't you, Kaylee?" Edgar holds the music maker in her daughter's lap and leans in close to brush a loose wisp of hair aside and kiss her forehead.
While the music brings joy, Kaylee's first year of life has been a struggle.
Kaylee was born Jan. 6, 2014, joining the Edgar family — parents, Erik and Tarah, and big sister, 3-year-old Emory — but something was wrong. She was limp and quiet, not what they expected after a normal pregnancy. Kaylee was flown from Stillwater to the University of Oklahoma Medical Center where she spent the next three months. After many tests, doctors finally came to a conclusion. Kaylee has congenital fiber-type disproportion myopathy, a rare condition affecting the muscles that control movement, including breathing.
Kaylee Edgar, 1, looks up at her mother, Tarah, at The Children's Center Rehabilitation Hospital. The Edgars are one of many families assisted by nonprofits that receive Noble Foundation grants.
The Children's Center Rehabilitation Hospital specializes in caring for children with complex medical disorders like Kaylee's. In April 2014, she was admitted to their care, and the staff immediately began working to wean her off the ventilator and train the Edgars in her care.
"The first year was rough," Edgar said, "but we try to stay positive. We can't imagine what it would have been like if The Children's Center Rehabilitation Hospital wasn't here."
Every day, Edgar drives more than an hour each way to see Kaylee. With training from The Children's Center Rehabilitation Hospital, the Edgars are able to take Kaylee home for monthly weekend visits, which means being up every three hours. For now, with Kaylee's critical need for constant care, her corner of the care unit is her home away from home, a pink paradise complete with dozens of hair bows and personal touches.
Just down the hall from Kaylee is a door. Right now, it leads outside. In the future, this door will open to another hallway leading to a four-story expansion, which will include a new education center and 40 additional patient beds. As part of a $30 million expansion, The Children's Center Rehabilitation Hospital will also renovate existing space into the "Activities of Daily Living Center," which will train patients to do everyday activities like walking and riding in a car in a simulated "real-world" environment.
A long-time supporter of The Children's Center Rehabilitation Hospital, the Noble Foundation donated $250,000 toward the expansion. The grant was part of the Noble Foundation's overall philanthropy effort that awarded $2,379,841 in 2014 through scholarships and grants to nonprofits, including the Ardmore Family YMCA and Boy Scouts of America. "The Children's Center Rehabilitation Hospital and Noble Foundation have shared goals of making life better for those in our communities," said Mary Kate Wilson, director of philanthropy, engagement and project management. "This is about Oklahoma helping Oklahoma, and the trustees are pleased to be part of it."
Laura Nelson (left) and Raman Saha received scholarships from the Noble Foundation. Scholarships are one part of the organization's overall philanthropic effort.
$2,379,841 total amount given in 2014 to worthy nonprofit organizations and in scholarships.
The expansion will help The Children's Center Rehabilitation Hospital serve 33 percent more patients, many of whom, including the Edgars, are from rural Oklahoma. One of the expansion's highlights is the 24 private rooms, which will help accommodate family time and training. Kaylee shares her care unit with eight to 10 other patients, and patients like her typically stay two years. "This is like her home," Edgar said. "Being able to have that privacy would be one of the few improvements you could make to such a caring hospital."
When Kaylee first came to The Children's Center Rehabilitation Hospital, she was not moving on her own at all. After nearly a year of rehabilitation, surrounded by her family's love and The Children's Center Rehabilitation Hospital staff's support, Kaylee is making progress. "Can you get my hand, Kaylee?" Edgar asked, leaning over to Kaylee lying on a play mat. Edgar wiggles her hand in front of Kaylee's, and slowly but surely Kaylee reaches her little hand up to touch it. "There's your proud smile," Edgar beamed.
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