'Miracle baby' now 5, and continues to surprise

Around Advocate Lutheran General Hospital in Park Ridge, they still call 5-year-old Javier Sotelo of Des Plaines the “miracle baby.”

After being born at 28 weeks gestation, he lived the first three years of his life in the hospital, and holds the distinction of having the longest inpatient stay.

This past Friday night, he nearly brought down the house when he joined two other children in the opening act of the hospital's “Rising Stars Talent Show.”

Javier rode his tricycle in the act, while 8-year-old Jeffrey Hofer of Des Plaines and 9-year-old Izabella Hatfield of Skokie showed off their walking skills. All three performed to the uplifting music, “Walking on Sunshine.”

“It's such a feel-good night,” says Margarita Redmond, an occupational therapist at the hospital who directed the 36 children featured in more than a dozen acts.

Their talents ranged from balancing, hopping and singing, to dancing and coordination exercises, all core skills refined by therapists at the hospital.

“Somehow the kids are much more interested in their therapy sessions, when they hear they're practicing for the show,” Redmond adds. “It's a huge motivator — and provides validation for their parents.”

This year's show nearly filled the hospital's Olson Auditorium with 250 parents, friends and medical staff.

“The children are the stars, but it also speaks to the extraordinary talent, skills and experience of the therapists, doctors and nurses in our pediatric therapies department,” says Sonal Patel, who manages the department.

More than 300 children receive physical, occupational and speech therapy each week as outpatients.

Therapists devised the talent show in 2000, and have held it every other year since then. Just two years ago they dedicated the evening to Javier, and less than one year later, he has begun to meet milestones his parents and doctors feared he would never reach.

“He had so many medical and neurological problems when he was born, that he was at a huge disadvantage,” says Dr. Gabriel Aljadeff, an associate professor pediatrics, who directs the hospital's pediatric pulmonology department.

“I have to say, I never thought he'd walk,” Aljadeff adds. “It's like a miracle, but then he's had the right environment.”

Aljadeff said Javier's parents are immersed in his care, and as are the many outpatient therapists who see him every week and the doctors and nurses who know him.

“It really does take a village,” Aljadeff says.

Last week, during one of Javier's occupational therapy sessions with Redmond, he worked on overcoming some of his sensory issues he battles, as well as the gross motor and fine motor skills.

Both of his parents watched as he went from a T-swing, to a beanbag chair, to grasping small toys and washing them in sudsy water.

“He's learning so many new activities,” says his father, Francisco. “He used to be in his crib. We never expected him to do these things.”

The most important skill his father point to, was that Javier is starting to spell. He still has a tracheotomy tube and for half of the day continues to be tethered to a respirator, making it difficult for him to speak.

“He tries to speak right through his trach tube,” says Colleen O'Neill, his speech and language pathologist. “He also uses sign language. We're hoping to use a Passy-Muir valve once he's off the ventilator completely, to help him get his voice.”

Surprisingly, none of these obstacles appear to keep Javier down. He smiles often, displaying his dimples, and freely gives out high-fives.

“He's like the mayor,” Redmond says. “Everyone knows him around here.”