Date: Fri 07-Feb-1997

Publication: Bee

Author: LIBRAR

Quick Words:

Summer-Ghent-patterning

Full Text:

Volunteers Sought To Help Realize the Promise Of Summer w/ cuts

BY KAAREN VALENTA

Summer Ghent lay on a padded infant's changing table in the living room of her

Sandy Hook home while her mother, Barbara, and two volunteers methodically

moved her arms, legs and head to mimic a crawling motion.

The three women smiled, chatted and murmured words of encouragement to Summer

as they moved her limbs and head rhythmically for five minutes. After a

five-minute rest, they started again, a process which would be repeated for

the next half hour.

For 10 to 12 hours a day, seven days a week, the tiny (14.8-lb) infant, who

will celebrate her first birthday next week, must undergo patterning and other

activities intended to stimulate the functioning of her brain. Born with a

rare brain disorder, Summer is participating in a program designed by the

Institute for the Achievement of Human Potential in Philadelphia, which has

successfully treated many children with brain disorders and injuries over the

past 20 years.

"We are making a townwide cry for help," said Karen Pierce, a Newtown resident

who is involved with the effort to find volunteers to assist Summer and her

family.

"Patterning is very easy to do and it takes under 40 minutes. But it takes

three persons per session, three times a day, seven days week," Mrs Pierce

said.

There are other needs as well.

"The family needs help with household chores, cooking, shopping, babysitting -

any help would be greatly appreciated to relieve some of the daily pressures

so their time can be devoted to Summer's needs," Mrs Pierce said. "This is a

wonderful, upbeat family who truly appreciates any generosity."

Nearly all of Barbara Ghent's day must be spent performing a rigorous routine

of physical therapy and stimulation on her youngest child. Three persons are

needed for the 40-minute patterning sessions at 6 am, 11 am and 7 pm every

day. But from the time Summer gets up until she gets her last dose of

medication to control seizures at 8 pm, the day is a blur of activity.

"Sixty times a day, for a minute at a time, I have to do `masking' which

involves placing a bag-like mask over Summer's nose and mouth and having her

breath into it," Mrs Ghent said.

"Five times a day there are exercises to develop her startle reflex. Twenty

times a day, I do exercises like lifting her from the ground to high over my

head, hanging her upside down and swinging her, pitching and rocking her,

jogging while holding her close, twisting slow and fast."

Summer was born with only 40 percent of the normal amount of optic nerves, and

while the nerves will not grow, specialists at the Institute believe the

nerves can be strengthened, Mrs Ghent said.

"They said they have taken children with worse atrophy than Summer's and they

can now see well," she said. "They think we should be able to get her to see

details by June."

So 20 times a day Barbara Ghent shines a light in each of Summer's eyes, one

second on, five off, for one minute. Thirty times a day there is a

follow-the-light routine performed in a darkened room.

"There are visual cards that I have to hold up in front of her face ten times

a day for a minute at a time," Mrs Ghent said. "We have a ramp which she is

placed on to help encourage the concept of crawling. She's on a special diet -

all organic - and is taking lots of vitamins and flax oil three times a day to

help her gain weight."

Last year fund-raising events by the Newtown Lions Club and other groups

raised more than $8,000 to help pay for Summer's medical needs. The expense,

not covered by insurance, is estimated at $10,000 per year for the next five

years.

At least twice a year for the next five years the Ghents will go to

Philadelphia for one-week sessions to evaluate Summer and update her therapy.

Barbara Ghent and her husband, Peter, a carpenter, spent a week and a half at

the Institute in December to begin the program.

"The first week my husband and I attended an 80-hour lecture series to learn

all about the brain and how it works," Mrs Ghent said. "The last few days we

had hands-on training with children who are in the program."

The Ghents then returned briefly to their home on Shadblow Terrace in the

Riverside section of Sandy Hook to get Summer and returned to Philadelphia to

complete the infant's medical evaluation and training over the next four days.

"We seemed to get into the program at the right time," Mrs Ghent said. "Summer

will be participating in a study to see how neurons function in the brain -

the biochemical process."

Barbara Ghent said she can already see changes in her daughter since the

patterning and other stimulation began on January 1.

"She is moving her arms and legs more. The other day I saw her `bicycling' her

legs - I've never seen her do that before. Her hands used to be curled up into

fists all the time but they are now open."

At first Mrs Ghent said she tried to set up a rigid schedule for each day for

Summer's therapy.

"I had each five minutes scheduled but I soon found that it just doesn't work

with a baby. I was getting very stressed out trying to adapt to the schedule.

Now I use a check-list instead."

The intensive program leaves little time for laundry, dishes, cleaning or even

spending time with the other children, Richard, 10, and Madison, 3.

"Easter, Christmas, birthdays - everything has to take second seat," Mrs Ghent

said. "But Madison is too young to understand. While I'm not paying attention

to her, she is busy trying to get attention. One day she scattered oatmeal all

over the house and there were puddles of water everywhere."

The Ghents have decided to put Madison into daycare three days a week to give

her a chance to socialize with other children and caregivers. It's an expense

of nearly $100 a week, which they can ill afford since Mrs Ghent was forced to

quit her job to provide full-time care for Summer.

But most of what they need doesn't have to cost money.

"We need volunteers - three people per patterning session - but they must be

reliable. We don't have any volunteers yet for Saturday and Sunday," Mrs

Pierce said. "We need help with household chores. Prepared meals like

casseroles that can be frozen are a blessing.

"Babysitting would be wonderful. Any break for the mother to go out and get a

cup of hot chocolate would be greatly welcome. Better yet, an occasional

evening out for both parents."

To volunteer for patterning, babysitting or other help, call Mrs Pierce at

426-1288.

Laurie Brautigham is organizing an aerobathon which will take place at The

Athletic Club in Bethel in March or April to raise money for the family. Any

businesses or individuals who want to help sponsor the aerobathon should call

her at 426-8184 for more information.

The Newtown Lions Club is collecting donations for Summer's medical care.

These can be sent to the club at PO Box 218, Newtown 06470. (Indicate on the

memo line that the donation is for Summer Ghent.)