Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: THURSDAY, January 28, 1993 TAG: 9301280331
SECTION: NEIGHBORS PAGE: S-1 EDITION: METRO
SOURCE: LYNN A. COYLE STAFF WRITER
DATELINE: LENGTH: Medium
SURGERY GIVES TWINS A CHANCE TO BE KIDS
It's the little things most of us take for granted that are cause for big celebration by 4-year-old twins Sarah and Stuart Moen these days.The children have made a lot of progress since they had surgery this past summer to help relieve the spasticity and tightness of their muscles caused by cerebral palsy.
Being able to leave the room when the children are sitting on a chair or bench and not worry that they'll fall over is a big relief, said Maggie Moen, their mother.
Sitting cross-legged on the floor "opens up a lot of other ways to play with other kids other than laying on your stomach," she said.
Sarah is proud that she has graduated from a crib to her new bed - a mattress on the floor that she can get in and out of without help.
"Sarah has improved in her walking[with a walker]. She used to be really slow." said her 8-year-old brother, Jacob.
Stuart enjoyed taking a joyride through McDonald's recently: running across the floor with his four-wheeled walker, then lifting his legs to glide along. And he's even taking few wobbly steps by himself these days.
Perhaps best of all, now they can give real hugs - wrapping their arms around your neck instead of next to it - said Jennifer Mulligan, a family friend who often helps with the children.
Residents of the Roanoke Valley and Southwest Virginia get some of the credit for Sarah's and Stuart's progress. The surgeries weren't covered by Blue Cross/Blue Shield of Virginia, so last year residents helped raise the more than $60,000 to pay for the surgeries and follow-up therapy.
"So many people helped in so many ways and obviously not for any recognition . . . very anonymously," Maggie said. She gave an example of an envelope that arrived before Christmas with a $20 bill, no return address and an unsigned note saying to use it for the children.
Thanks to that kind of generosity, the children traveled to St. Louis to have the five-hour neurological surgery, called selective dorsal rhizotomy. Nerve rootlets were exposed, then stimulated electrically. Those sending out the most abnormal messages were cut, thus breaking the pattern of abnormal messages from the brain to the muscles.
The children's father, Stuart Moen, said he's satisfied with the surgeries but had to adjust to the kids' looser muscles. "I found some things harder to do," he said. For example, putting on socks was easier when their legs were stiffer.
"One of the most important factors in their progress is their post-operative physical therapy," which they take five times a week with Wendy Lucas of Lucas Physical Therapy, Maggie said.
"I can't tell you how good she is," Maggie said of Lucas, who has worked with the children since they were 18 months old. "I am sure they are getting the maximum benefit from the surgery because of her."
Lucas, who traveled to St. Louis for special training in working with post-rhizotomy patients, had worked with two others before Sarah and Stuart. She said that since their surgeries, the twins can move around a lot more easily and can sit and play in positions from which they formerly would have fallen over. They can get in and out of sitting and playing positions, climb off a bench and get in and out of their walkers, all without assistance.
Stuart can "cruise" - walk around furniture holding on - and probably soon will be able to walk with canes, Lucas said. Sarah will probably soon get four wheels on her walker, which now has two, the physical therapist predicted.
This year the twins are attending the Raleigh Court Presbyterian Church preschool program and have done well with kids their own age, Maggie said. Before, they attended REACH, a special program for handicapped children.
The goal is for them to attend a regular school. If they can learn to transfer from their chairs to their walkers and back unassisted, it will be a big step toward that goal, Maggie said.
Recently, Stuart excused himself from the little table and chairs where he and Sarah eat dinner, got down and crawled away to do something. "He couldn't have come anywhere near that before," Maggie said.
"We are more than pleased with the results of this," said Maggie. "It was a scary thing going into it."
She said she would recommend such surgery to anyone considering it.
Lucas said anyone considering the surgery for their child should discuss it with their pediatrician or physical therapist. "It strictly depends on their diagnosis and their functioning within that diagnosis," she said. "But for the right kid, it's an excellent choice."