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Wednesday, May 4, 2016

Learning to walk ... at the age of 9

Thursday, October 30, 2008

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Have you ever heard a family member talk about your first step or the first word you said? For a child with Cerebral Palsy (CP) these things are not as easy.

Cerebral Palsy is a condition that affects thousands of babies and children each year. Normally, the brain tells the rest of the body exactly what to do and when to do it. But because CP affects the brain, depending on what part of the brain is affected by this disease, a child may not be able to walk, talk, eat or play the way most children do.

The Recollet family of Sharp County is one of many families affected by CP. Kaneda and her husband Steve have a son, Dylan, who was diagnosed with CP in 2000. Dylan's first steps may have come much later than most children but they are steps that will never be forgotten.

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Dylan is a twin, he and his sister Tara were born in September 1999, three months early. Dylan weighed 1 pound, 15 ounces and he and his sister were on ventilators for several weeks to keep them alive.

As the twins grew, Kaneda and Steve noticed Dylan wasn't developing as well as Tara. "I asked the doctors why Tara was walking and able to do all of these things and Dylan could barely hold his head up without getting tired," Kaneda said. She said the doctors finally scheduled an MRI for Dylan when he was a year old.

"They didn't tell me anything. I called and couldn't get any answers," Kaneda said. "I got home one night and had received a letter telling me my son had periventricular leukomalacia (PVL). I had no idea what this meant," Kaneda said. "The letter said this means the motor skill part of the brain is dead. I was devastated."

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Kaneda said she could not get the answers she wanted from the doctors, so, she has done much of the research on Dylan's condition herself. "They (the doctors) said they didn't think he would ever walk or talk," Kaneda said.

Dylan has been through a lot for a 9-year-old boy. He couldn't eat without gagging and he had a feeding tube put in. Kaneda said he was sick the whole time the feeding tube was in. "I would give him little tastes of food so he wouldn't lose that sensation in his mouth," Kaneda said.

Finally, after swallow studies, they removed the feeding tube and Kaneda said he eats fine. "He still gets choked up once in a while but it's no big deal, it's just like us when something goes down the wrong wind pipe," Kaneda said.

Dylan had to have botox injections every three months for his muscles. Research has found that botox helps to relax the muscles and help make stretching easier for children with CP.

In the summer of 2008, the botox stopped being as effective and Dylan's muscles started drawing up. "The doctor told us we should start considering surgery," Kaneda said. "About the time we stopped the botox, we heard of a little girl with CP who had died from the injections."

Steve and Kaneda talked with Dylan and explained the procedure the doctors had suggested for him. "Dylan was a little sceptical at first because of the pain," Kaneda said. "He (Dylan) always tells me, 'No pain no gain, mom.'"

Dylan went in for the muscle lengthening surgery on July 9 of this year. The surgery consisted of having his aceles, hamstring and adductor (groin) muscles cut to help prevent the tightening of the muscles caused by CP. "I don't think he (Dylan) expected that much pain," Kaneda said.

Stephanie Terry, Dylan's therapist, has worked with Dylan since he was 8 months old. Dylan sees Terry three times a week. Kaneda said Terry is great with Dylan.

On Oct. 14, Dylan took his very first steps in his nine years of life, by himself (with his walker). "I just want to thank everyone for their thoughts and prayers," Kaneda said. "Our prayers have been answered."

Dylan also defied the odds with his mental skills and ability to talk. Kaneda said he is just like any other child, he never stops talking.

Dylan attends Cherokee Elementary where Kaneda said his sister Tara is very protective of him. "She is starting to get so protective she tries to tell the aides at school how to take care of him," Kaneda said.

Kaneda said Dylan loves to go hunting with his papa. "He gets up in the stand and everything," Kaneda said.

Dylan also loves wrestling with his daddy, Steve, and watching cowboy movies. "I think if you treat them (handicapped children) like they are handicapped they will be more that way," Kaneda said. "Dylan is a regular boy and that is how we treat him."

Kaneda said she feels they have been blessed, many children with CP can't do the things Dylan is able to, like talk. "I can't imagine not hearing an 'I love you mommy' on a day to day basis," Kaneda said.



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