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Full house: Caring couple fills children's special needs

Full house: Caring couple fills children's special needs

By 5:30 a.m., Cheryl Degges starts waking children for school. The daily routine takes two hours and two aides.

While the baby sleeps, Cheryl diapers and spoon-feeds a textured baby food to her 10-year-old adopted daughter, Nikita, who wears her thick brown hair swept up.

The walls of the downstairs bedroom wear bold paint with pink and purple trim. Earrings, reserved for special occasions, fill a bright pink holder above a nightstand, and a girlish, pink and purple dome-shaped bed tent covers Nikita's hospital bed. A CD player above a second hospital bed fills the room with a soothing, Celtic melody.

The music is for Nikita's 19-year-old sister, Lisa, who has china-doll pale skin and fine, pale red hair.

Lisa, blind and unable to swallow, relies on a feeding tube for nourishment. She breathes through a tracheotomy tube in her neck. At night, a humidifier hooked to the trach tube eases her breathing.

Once a night, Cheryl's husband, Greg, wakes up to refill the humidifier.

Using a wheeled plastic shower chair, a personal-care attendant rolls Marika back to the room's third hospital bed after a shower. In October, the Deggeses became guardians for Marika, who turns 11 in late November and has cerebral palsy.

While her leg braces are fastened and an aide dresses her in jeans, Marika's eyes drink in the scene. When she catches a glance in her direction, she beams a brilliant smile.

By 6:30 a.m., Greg, dressed for work at EBC Trusses, begins feeding the baby and making breakfast for other youngsters.

Their split-level house on the West End is home to nine children - five of them adopted, three in temporary foster care and Marika, the newest addition to their permanent family.

Four of those family members are in wheelchairs, although three can walk short distances with support. Two suffer permanent brain damage from shaken-baby syndrome, injuries caused by being violently shaken in infancy.

The Deggeses' remarkable family started with a surgery.

Fourteen years ago, when Cheryl was 25, she had a hysterectomy, which crushed her dreams of a big family. She was doing respite care for a young woman with disabilities when Greg suggested they adopt a special-needs child wanted by no one else.

When they walked into Lisa's life in August of 2002, she was a tiny 13-year-old in a pink-striped dress. She sat in a wheelchair with her head down in the dining room of a nursing home in Plentywood.

Lisa, who had been in the nursing home for two years, was a shaken baby, unable to speak.

The Deggeses gave her a stuffed bear.

Lisa smiled and started giggling. Her joy touched them.

"There she was, blind, dependent on other people, and she could still sit and giggle and be happy," Greg said.

Lisa's needs were so intense that the couple assumed she would be their only child.

Within two years, they reached out to adopt Zachary, who was then nearly 8, a shaken baby who had been up for adoption since infancy. He was blind, unable to walk and spent most of his waking hours in a foster home lying on his back on a thick mat in a garage.

"He screamed all the time. He rolled on his arms on the floor. He used to hit his forehead and bite his hands until he bled," Cheryl said.

They were told Zach had no communication or comprehension skills.

"There was no doubt in my mind that he knew what I was saying to him," Cheryl said. "We would tell him that we loved him, and he'd beat himself because of everything he went through before us.

"He was in his own little world and he didn't want to come out. That was his protection. That's what he knew. And then, when he realized that there is a different world and there's one that's going to protect him and he can be who he is, he's just blossomed."

Within three months, he could help as he was lifted to standing. A Denver doctor, who saw Zach's progress, ordered intensive therapy. Under a subsidized adoption, children in foster care are eligible for Medicaid until age 18.

Leaning heavily on an arm for support, Zach, 11, can now walk. With guidance, he feeds himself. He sometimes answers questions by shaking his head "yes" or "no."

"To say 'no,' that was his first word. And Mom," Cheryl said.

"And he only says them when he's really mad," she added, then she burst into a bubbly, nervous laugh followed by a wide-open smile.

Once the Deggeses got Zachary through the worst of the screaming, biting and temper tantrums, they knew they were ready for more children.

"Everybody has something in their life that they're meant to do. And we found ours," Cheryl said.

The couple continues to marvel at the resilience and love shown by children who have endured appalling hardships.

Cheryl's father, Tim Litzinger, who lives in Chillicothe, Ohio, has seen those youngsters thrive.

"Sometimes, I think she has a gift of looking at some of these kids and basically knowing where they can go," he said.

Suzanne Braun, with Child and Family Services, began working with the Deggeses before they adopted their first child. In the Billings region, which includes 11 counties, only three or four families are willing to take special-needs foster children because they sometimes require 24-hour care, Braun said.

Cheryl's training as a licensed practical nurse helps her deal with the complex medical and physical needs of children with disabilities. But Braun credits Cheryl's patience and organizational skills with keeping the household running smoothly.

She thrives on the demanding needs, hectic schedule and mountain of chores, Litzinger said. The more things to juggle, the more content Cheryl appears.

In a day-planner, Cheryl schedules a litany of activities from doctors' visits and brace adjustments to therapy sessions and Special Olympics sports practices. The home couldn't function without personal-care attendants, some of whom have been with the family since Lisa was adopted, Cheryl said.

The Deggeses, who have been married 16 years, work well as a team, said Kellie Rudio, a personal-care attendant who has worked in their home for eight months. The couple communicates what needs to be done almost wordlessly, Rudio said.

The couple spent an overnight alone together once this summer. While the children are in school, the Deggeses try to sometimes go out to lunch together. Greg works full-time designing trusses on computer. Cheryl works part-time as an LPN.

Zach, Nikita and Marika go to Meadowlark Elementary, which has a special-needs classroom, while Lisa stays home. The two other adopted children go to Arrowhead Elementary.

John, 10, has fetal alcohol syndrome and is about a grade level behind academically. His biological sister, Tiffany, 9, was diagnosed with fetal alcohol effect, but shows no signs of impairment.

"John and Tiffany came to us when they were in first and second grade, and they didn't even know how to read," Cheryl said. "They're doing awesomely well."

When the Deggeses began thinking about adopting John and Tiffany, they found a bigger home. They recently got a grant from the state to help pay for a lift, which would make their split level function more efficiently.

Normal household chores, such as shopping and laundry, pile up in prodigious proportions. The family and personal-care attendants do an average of six loads of laundry each day.

Therapists have prescribed exercises for the youngsters. The children in wheelchairs each need to spend 45 minutes a day in standers, equipment that supports them while they stand and helps them avoid having leg muscles contract. They also have mouth exercises to help develop their speech and chewing muscles.

"You wonder how she can handle it until you sit back and watch her," Litzinger said. "With her, it's just daily life. She just seems to thrive on taking care of these kids."

Litzinger has seen an even greater transformation in Greg, who is nearly 20 years older than Cheryl. After a crippling back injury in 1996, Greg spent three years unable to walk. Even after surgery, the disability continues to cause him constant pain.

"He was in construction, a rough-and-ready type guy, an ex-Marine," Litzinger said.

"These kids would never understand a drill sergeant. It's been really neat to watch Greg change gears because he had to with the kids. I think he found he really loved it."

Greg, who has two grown daughters from a previous marriage, is particularly enthralled with the infant they have in foster care.

"At night, the minute I walk in from work, I feed the baby and go at it," he said. "I look forward to seeing the baby. … Since we've been fostering this one, I've kind of fallen in love with her."

Both parents seem energized by small signs of progress, such as Nikita moving from a smooth to chunky baby food. Well before sunrise, Cheryl sits in her nightgown beside Nikita while coaxing her daughter to swallow the baby food and then spoonfuls of a nutritionally balanced liquid formula.

At first, Nikita purposely throws up, causing the strawberry-flavored nutritional drink to stream down her undershirt, which necessitates a morning shower. With a measure of firm determination, Cheryl gets Nikita to cooperate with the spoon feeding.

Each morning's battle over baby food signals a victory.

"She's just learning how to do the chewing motion that baby's do," Cheryl said.

Two years ago, Nikita took all her nutrition from the nutritional drink. She weighed 32 pounds when she arrived at the Deggeses' home. For the first year, she was in the hospital every three months for dehydration caused by vomiting.

As an infant, Nikita was diagnosed with a mitochondrial disease, a disorder that affects the cells' energy-producing "power plants." The disorder can cause a range of symptoms including mental retardation and muscle weakness.

While dressing or feeding Nikita, Cheryl keeps up a running stream of banter.

"Huh, big girl?" she asks, followed a few moments later by, "Whatcha doing, gorgeous?"

Nikita communicates with facial expressions or gestures, such as shaking her head or tapping her hand.

Within the last few months, she has begun to get more control over her hands, a control she exercises by rolling her wheelchair back across the room, until an obstacle blocks its path. She wears a body brace and can walk for short distances when someone supports her from behind.

She gets a thrill out of riding a specially adapted trike during physical-therapy sessions at the Scottish Rite Clinic.

When Nikita arrives at her morning therapy session wearing a T-shirt, jeans and white Crocs, her occupational therapist, Erica Schuppe, compliments her rubbery clogs. Schuppe appreciates the extra effort it takes to dress Nikita in pre-teen clothes and hair styles.

"She not just in pink sweats because they're easy," Schuppe said. "It's things really appropriate for a 10-year-old girl."

Nikita has made progress in several areas, including using her right arm, which at first, she largely ignored.

"When they're making really good progress, you can tell everyone's following through," Schuppe said.

At a laptop computer, Nikita practices scanning the screen and pressing a large, dome-shaped switch to start or stop the action. The better she gets at scanning and switching, the more she will be able to use communication devices, Schuppe said.

Marika, who has cerebral palsy, also works with scanning devices to increase her communication skills. Marika is smart enough to tell the difference between a penny and a dime, Cheryl said.

Eventually, a large communication board may be mounted to her wheelchair, and she will push a button to stop on specific responses. One challenge is the time it takes for Marika's body to respond to her mind.

Marika and Nikita do physical-therapy sessions together, sometimes sitting back-to-back on an indoor platform swing for balance.

In the months since they entered the Degges home, the two girls have become close. Sometimes, they'll hold hands when their wheelchairs are parked near each other.

"They're just like biological sisters," Cheryl said. "They've had a special bond since the date they met. They'll lay on the floor and play with toys with each other, and then, the next thing you know, they'll be pulling each other's hair."

With their adopted children and the three foster-care children, the Deggeses' household is considered "full." But, when those foster children return to their own homes, the couple wants to adopt one more child.

"We'd like to adopt our own baby," Cheryl said. "All of the children that we have adopted have been six and older. We're very happy with that, but I've never had a baby of my own."

To the Deggeses, it's irrelevant whether the infant has special needs.

Contact Donna Healy at dhealy@billingsgazette.com or 657-1292.

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