Wednesday, August 24, 2011

Tales of Three SBS Survivors: Jay-J in New York, Ryan Corrigan in Iowa, Alec Van Beveren in Ohio

Two Three stories that give some insight to the hard challenges that follow survivors of inflicted head injury....

In North Tonowanda, New York, tells the story of Jay-J, who's only 19 months old.
There's nothing "typical" about a typical day for the boy they call "Jay-J..."
Jay J's stepgrandmother, Tabitha Retzer said, "On a day-to-day basis, he has five different medications, three times a day, he has to take. He's a special diet, so that has to all be weighed out -- everything to tenths of a gram."  Jay-J has Lennox-Gastaut Sydrome, a neurological condition that causes severe seizures.
"His worst day was almost 200 seizures. And that was just painful to watch," added Retzer.

Doctors believe Jay-J developed L-G-S after being abused by his father as an infant.   Jay-J's maternal grandparents, who now have full custody of him, have struggled to put that behind them.

Retzer said, "It breaks your heart to think about it, so you kind of have to put that aside, in order to be active for him in the moment. He needs me now, not to be dwelling on what happened to him six, eight, ten, twelve months ago."

Now, at 19 months old, Jay-J receives physical and occupational therapy, as well as special education.
And Eastern Iowa Life tells the story of Jeff and Kirsten Corrigan, and their son...
...Ryan, 10, has endured a lifetime of profound cognitive and physical disabilities due to being shaken when he was 9 months old by a trusted caregiver, Mark Francke.

Mostly confined to a wheelchair, Ryan is non-verbal, cannot walk or stand on his own and has limited use of his arms.  He receives physical therapy once a week to work on stretching, range of motion and functional activities.

“A child’s body is a changing body,” says Sarah Bengtson, Ryan’s physical therapist at Witwer Children’s Therapy Center, 1079 N. Center Point Rd., Hiawatha. “It’s important to work with his spasticity (muscle tightness) and tone.” 

Although integrated with his fourth-grade peers at Indian Creek Elementary in the Linn-Mar School District, he is in the Level 3, severe and profound special education program.

And today, the Advertiser-Tribune brings the story of Amy Laird and Alec Beveren in Ohio
Alec Van Beveren is about to turn 14, but he suffered a brain injury as an infant that permanently limited his neurological development to that of a 4-month-old baby. The injury was the result of shaken baby syndrome.

Although the man who harmed Alec was tried in court and served time in prison, Alec's mother, Amy Laird of Tiffin, has borne the responsibility of caring for her disabled son. Now that he is older and bigger, caring for him at home has become more difficult for the petite woman.

Amy also cares for other children in her home to supplement the family income. That way, she can keep Alec home from school if he is ill and take him to appointments. She said he still has frequent epileptic seizures.

"Some things bring on a seizure, like loud noises, or something startling him," Amy said. "He takes two kinds of medications and he has a vagal nerve stimulator."  Recently, Alec had surgery to replace the vagal nerve stimulator that was implanted in is chest in 2004. Wires run up his neck and into his brain to deliver electrical impulses every two minutes.

As Alec adjusts to the new stimulator, the time is to be adjusted. Amy said the doctor programs the device with a wand. Although the stimulator does not stop the seizures, it does shorten their length.  Amy also has special magnets she can swipe across the stimulator to stop an intense seizure.

Amy takes Alec to Nationwide Children's Hospital in Columbus for doctors' visits and numerous hospital stays. Two years ago, Alec had a spinal fusion to correct scoliosis and make him more comfortable in his chair.  Because his muscles and bones have not developed normally, he is not able to support his body weight even in a sitting position.

Early on, Alec had a feeding tube put in and an additional surgery to insert a valve to prevent vomiting. Now he has a smaller tube called a mickey button, which must be replaced every three months.

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