A child's challenges

SANDPOINT - Gavin Scheel, 2,  uses his teeth like fingers, gripping a marker between them to draw.

He taps blocks over with his nose and bumps his forehead against a touch screen to operate a computer. 

Instead of crawling or walking to his destination, he rolls.

“He rolls all over the living room,” said his mother, Stacy. He's fast - he's all boy.”

Gavin has arthgryposis multiplex congenita - a disorder caused because the motion of his joints were limited while he was in his birth mother's womb.

The Greek term means joint crooking. It comes in two forms - classic and severe, said Stacey, his adoptive mother.

The disorder has a variety of causes, according to amcsupportgroup.org. Those include neurologic and muscle deficits, defective tissue and skeletal defects, fetal crowing or constraint, or maternal disorders such as infection or trauma, drug use or possible maternal multiple sclerosis.

When Scheel and her husband, Jeromy, first saw Gavin, he was 14 days old. He looked like a pretzel, she said, his arms and legs bent.

“The first time we saw him, we pretty much cried,” she said.

The Scheels had two birth daughters when they  decided they wanted another child. They decided to sign up for Idaho's foster adoption program.

Gavin was their first foster child.

“The girls said he was the cutest baby ever,” Stacy Scheel said.

Most of his joints are effected - his jaw slightly and his legs and arms severely. The goal is to one day straighten and strengthen his legs and arms enough so that he can transfer on his own from a wheelchair to a car, Stacy said.

Fostering a special needs child was scary and at first the Scheels did not feel competent caring for him, she said.

He was born with a suck reflex, but could not hold anything on his mouth, although he could eat on his own.

Fortunately, the Scheel's have an “amazing support group,” that includes Stacey's mother, doctors and Shriners Children's Hospital. 

Gavin has a wheelchair that is on loan, but it often does not work. “I don't know if it's me or the wheelchair,” Stacy said. The battery will not take a charge, she added.

If Gavin can prove he can safely operate his own wheelchair, Shriners will get him one, she said. “He's in driver's ed.”

The family receives adoption assistance for Gavin, whom officially became their son in December. He is on the family's insurance and the state covers his medical premium. Stacy also receives a subsidy for caring for Gavin.

No day is typical in the Scheel's Bayview Road household, she said. Stacy, 33, is a stay at home mom and Jeromy, also 33, is a resource manager for Diedrich Manufacturing.

Stacy homeschools their girls because it was too difficult trying to pick them up at school on time and take Gavin to physical therapy.

He attends physical therapy once a week at Bonner General Hospital with Kids in Motion and his parents work with him every day. For a while, he also had speech therapy.

He also has occupational therapy once a week and is a participant in the Idaho Department of Health and Welfare's Idaho Infant Toddler program that helps families in such situations. 

Gavin also has a gait trainer - a child's version of a walker - he can take three or four steps across the kitchen floor, “but it's a big process for him,” Stacy said.

A state worker comes to there home on Wednesdays to work with Gavin, who loves the young woman. When he sees her, “he rolls from one part of the living room to the door,” Stacy Scheel said.

He has had two surgeries to repair club feet and may have more on his knees and hips. However, doctors are trying to determine if the surgery would help or cause problems for him because it could make it more uncomfortable for him while he is seated in a wheelchair.

He lets the family know when he is awake in the morning with a “mamma” - Gavin has yet to get out of his bed on his own, but Stacy suspects he will figure that out at before long.

He eats fairly well and is becoming quite independent.  He wants to feed himself, so Stacy holds his spoon in his hand and he thinks he's feeding himself, she said.

“His arm doesn't bend very well,” Stacy said. “It's a bit of a challenge.”

Gavin enjoys playing animal games on his computer with a touch screen that he controls with his head. He likes books and turns the pages with his mouth.

It is doubtful that Gavin will ever walk more than a few steps. Therapy and braces may make life easier by his being able to transfer on his own from his wheelchair to a car.

Fortunately, Stacy said, Gavin's disorder will not get any worse and he is of normal intelligence. “He's a smart little guy,” she said.

Other challenges have yet to be addressed.

The family's living room is a step lower than the home's other rooms, so for now Gavin has to be carried from one room to the other. At some point, as he becomes bigger, the family will have to find a solution to that problem, Stacy said.

Nanci Grayson Jenkins, coordinator of Jacey's Race in Sandpoint, is working to raise funds for the family - possibly to build a wheelchair ramp to  make access to their home easier.

The race, set for Sunday, July 13, at Sandpoint High School, benefits children with chronic of life-threatening illnesses. Gavin Scheel and Summer Smith, a little girl with a disorder believed to have been caused by a chicken pox vaccine, are this year's recipients.

The race was started after Jenkins' daughter, Jacey, was diagnosed with Stage 4 cancer eight years ago. They were living in Colorado at the time and a friend started the race to show support for the family. When her family moved to Sandpoint, they decided to keep the race going.

Community support has been tremendous, said Stacy Scheel.

“I think we've got the best community support,” she said. “It's exciting.”

The Scheels recently agreed to foster another child, also another special needs child that they cannot discuss because of privacy rules related to foster children.

“It's a tall order,” Stacy Scheel said.

€ Information: Jacey's Race is a 1K and a 5K. Cost is $25 if you register by July 1; on site the day of the race, cost is $30. Children 12 and under walk for free. All proceeds go to benefit the families of Gavin Scheel and Summer Smith. Jacey's Race includes all kinds of  kids' games and is run by a substantial volunteer force. To find out more, see www.jaceys-race.com