In his brief but doctor/nurse/therapist-filled life, 5-year-old Greyson has seen a lot, but he still isn’t sure what to expect when Romin, his dad, takes him by the hand and walks him into the Child Development and Rehabilitation Center at Johns Hopkins All Children’s Hospital. Mom is half a state away, home caring for his baby sister.
Oh, he knows there’s a party all right. He has been buzzing about it for days. “We need trains at my party,” he keeps reminding his father, pulling on his arm.
Meanwhile Cara Harper and Rachel Walding, his speech therapists, put the finishing touches on the train balloons and other decorations in the therapy room. They are very aware of the train thing. They’ve been hearing about it for weeks. In fact, Cara found the music to Believe, the song from Polar Express and is fully expecting Greyson to sing it to the speech and occupational therapists and the nutritionists who’ve been caring for him. It’s his party after all, and they helped him earn this celebration.
Greyson is graduating from the Happy Mealtimes Program. His parents are over the moon. He has made enormous progress with the feeding tube weening and is accepting different foods and purees. It’s a locomotive-sized accomplishment.
To say Greyson had a rough start of it, would be putting it mildly. Born at 24 weeks weighing 1.6 pounds–not much more than a big can of chicken noodle soup–Greyson fought like a champion to survive everything that was thrown at him, from chronic lung disease to bronchopulmonary dysplasia to retinopathy. He was oxygen-dependent for 44 weeks and on a feeding tube for five long years. He’d never eaten a morsel. He didn’t know how to operate a fork or chew his food. He didn’t understand swallowing.
Not that he hadn’t tried.
“Greyson has been working with therapists since he was a year old and out of the hospital,” Romin explains. “He made virtually no progress.”
Then a pediatrician referred the Jupiter family to Johns Hopkins All Children’s Hospital on the opposite coast in St. Petersburg, Florida, for the successful month-long, full-time, multidisciplinary feeding program. The family, despite Romin and Rebecca both working full time and having a toddler to care for, decided they would find a way to make it happen.
“He just did great. The therapists really knew what they were doing with him,” a relieved dad recalls. “He really responded to them. He’s comfortable with them and that really matters.”
Comfortable enough to remember all the words to belt out at his graduation party:
Believe in what you feel inside
Give your dreams the wings to fly
You have everything you need if you just believe