Dreams, not despair

This four-part series follows the Luke and Zach Branson, twins from North Aurora, through their daily life dealing with the effects of cerebral palsy and the myriad, often experimental, treatments and surgeries they've undergone.

Part I

Kerri and Scott Branson knew something was terribly wrong with their newborn twins.

Born three months premature in September 1997 and under three pounds each, the twins barely slept, waking up five times a night. Kerri sometimes slept in the crib with them hoping it wouldn't collapse.

The older of the two by 30 minutes, Luke's tiny body was often rigid, clenched tight in discomfort. But Zachary's body was floppy and unresponsive.

As the weeks wore on, the twins didn't sit up or roll. They couldn't even hold up their heads.

They projectile vomited two to three times after every meal, and Zach showed signs of asthma.

And they cried, all the time.

"(We) just wanted to know how to fix it," Kerri said. "That first year was really hard."

Frequent hospitalizations in the first weeks and months yielded little solace and raised only more questions.

A possible diagnosis lurked in the back of their minds, but they hoped it wasn't so. Before delivery, they were given a warning and told to prepare for the worst.

Zach likely had periventricular leukomalicia, or PVL, a type of brain damage where the white matter of the brain gels over rather than develops. As a result, he was at risk to develop cerebral palsy.

Nine months later, Kerri and Scott got the final answer they had been both seeking and fearing.

However, no one was prepared for Luke's condition to be the same.

Luke and Zachary were both diagnosed with spastic quadriplegia cerebral palsy, as a result of having PVL.

The exact cause of PVL is unknown, although doctors speculate it is linked to a blood shortage to the brain in the fluid spaces surrounding the central nervous system and brain. The brain tissue in this area dies and results in the softening of the white matter of the brain.

In Luke and Zach's cases, the brain damage from PVL led to cerebral palsy. The damage to these areas in the brain affects the brain's ability to control muscle coordination and body movement. It has left the twins wheelchair-bound, unable to walk on their own, mostly non-verbal, prone to seizures and unable to eat full meals by mouth.

Cerebral palsy affects between two and three out of every 1,000 children born in the United States.

The couple cried for two days after they found out. Kerri says every time she thought about it or had to change a diaper she got a lump in her throat.

"All the dreams you have about your child are thrown out the window. Your future is now uncertain. The only thing you can do is depend on God, and trust that he is going to help you pull through," Kerri says.

"So, we decided to buck up, and roll with the punches. How is feeling sorry for yourself and your children going to help them?" Kerri says. "We needed to stay strong so that we could give Luke and Zach the best possible life."

But giving them a better life consumed theirs. Their lives became stressful and chaotic, filled with frequent trips to the emergency room, and multiple surgeries and medications for the boys. It also has meant even experimenting with a promising treatment seldom used to ease the crippling symptoms of cerebral palsy.

Though they have 12 hours each of therapy a week, the sometimes called "experimental" treatment of hyperbaric oxygen therapy, also known as HBOT, is offering Luke, Zach and their family the most hope.

HBOT treatments have helped the twins advance physically and mentally faster than traditional therapies. Scott and Kerri say they see new improvements with each round of treatments.

'Happy yet sad'

"Lukedddelicious! Zachalacka!"

Giggles can be heard coming from a back room.

Walking through the front room, two wheelchairs, one green, one purple, stand side by side near the front door. Blue's Clues backpacks hang from the back.

"Knock Knock, who's there? Olive. Olive who? Olive you!"

The house fills with squeals of laughter.

The path of laughter takes visitors down a short hallway, lined with numerous photographs of children. Toys and more photos are sprinkled around the ranch-style, three-bedroom house.

There, on the other side of the couch, are Kerri, Luke and Zach, all still smiling.

The 8-year-old fraternal twins have quite different personalities. Luke is sensitive and shy, and likes lots of attention. He is the more emotional of the two. Zach is almost a polar opposite - quick to smile and laugh, laid back most of the time, and loves to be where the action is.

They have their favorite TV shows, "Blue's Clue's" and "Dora the Explorer," which they like to enjoy with their siblings, Sam, 5, and Leah, 3.

Despite the obvious signs of their special needs, it is not at all a sterile environment. It is chaotic but filled with a sense of warmth and love.

Kerri describes their lives as "happy yet sad. Calm on the inside, while we live in hysteria on the outside. We are a very close family and (are) very fortunate to have each other."

Though sometimes the home looks a bit disheveled, with clothes and toys here and there, the children come first.

Kerri and Scott say they have learned not to worry about the things that don't need to be taken care of immediately, like folding laundry or picking up toys.

When they get a moment, perhaps when the kids are napping, they try to catch up with the house duties.

The daily grind

Luke and Zachary's day starts bright and early at 6 a.m., with breakfast and diaper changes first.

The boys are placed in special foam chairs, called feeder chairs, that prop them up in a sitting position. Their breakfast is a blend of canned soup, nutritional supplements and Enfamil with Kerri calculating the calories, fat, carbohydrates and protein. She adds in their supplement therapy, a combination of vitamins A, C, E, B vitamin complex, cod liver oil and neuroactive vitamins.

Sucked up into a large plastic syringe, the mixture is injected directly into their stomachs through their gastronomy tubes, commonly called G-Tubes. Put in a year after the twins were born to address nutrition and development concerns, the G-Tube is a port installed in the abdomen that allows food to bypass the esophagus and enter the digestive tract.

The G-Tubes are necessary because Luke and Zach lack the suck/swallow reflex, meaning they'll immediately spit out some of any food or liquid consumed.

Still, Kerri and Scott are able to give the twins a small taste by mouth of whatever everyone else is eating - they call it a "taste tester."

They also get their morning medications through the G-Tubes. Both get different forms of seizure preventatives, with Luke also getting medicine to help with his acid reflux/vomiting tendency.

Next on the agenda is dressing for school - the usual regimen of teeth brushing and hair combing and lunch packing. Kerri makes sure their backpacks containing seizure medications, lunch and notes to the teacher are ready before the bus picks them up for first grade at Hope D. Wall School in Aurora.

Hope D. Wall is a special-needs school that offers three programs geared toward different ages and levels of special education.

The bus picks them up in front of their home at 8 a.m., the twins often escorted by Sam and Leah. After kisses and waves goodbye, they're off for a day at school. "Be careful!" yells Sam as the bus pulls away.

If they have physical therapy in the morning, their school day starts a bit later.

The first-graders enjoy going to school where they learn their colors and shapes, sing and even have a cooking segment in their class, making treats like pudding and cookie cups. They sample a little of the sweet treat by mouth, but not much goes down.

Around 2:30 p.m., the bus returns, dropping off the twins. Pushing one wheelchair and pulling the other, Kerri walks into the garage and onto a motorized chair lift with a twin. Posters of past fund-raisers for the twins decorate the walls of the garage, the boys' faces smiling back.

Kerri takes one of the boys' hands and gently stretches out a finger to help them press the button to go up, one at a time.

After-school time is spent in different ways, depending on their therapy schedules. They might have a snack or dinner (everything going through their G-Tubes) and rest a little before heading off for therapy. Scott comes home in the evening, taking over for Kerri so she gets a bit of a break.

Bedtime comes around 9:30 p.m., along with more medication, including valium. The depressant helps them relax and fall asleep easier. The effect, though, is temporary. Luke and Zach often wake in the middle of the night, crying out for their parents to help them move to a more comfortable sleeping position - something they can't do on their own.

A life of therapy

Of the four types of cerebral palsy that exist, Luke and Zach have the most common form, spastic cerebral palsy.

The muscles in all four limbs are severely tight and resist being stretched out. Overactive muscles produce movements that are stiff and jerky. Their little fingers are clasped tight but cannot grasp. Objects slip out of their hands, as they are unable to hold onto things.

A combination of therapy, drugs and surgeries help make their condition manageable.

Muscle surgeries in August 2003 have yielded tremendous physical gains when combined with all the types of therapy they have. Other health issues they deal with are seizure disorders, hyperactive sensory problems (overexcited senses), cortical blindness, and Zach's asthma.Ever since their infancy, Luke and Zachary have had several types of physical and cognitive therapy. Each boy has 12 hours a week of therapy comprised of physical, occupational, speech and vision therapies. Some is private, some is at school.

Physical treatments are roughly one to two hours long, three times a week. They work on developing and strengthening gross motor skills, such as the arms, abdomen and legs, which in turn improves balance, movement and standing. It also prevents deterioration or weakening of all muscle groups and possible musculoskeletal problems.

Having started physical therapy when they were 2 months old, the twins are pros at it. One exercise is how long they can hold their heads up on their own.

"Thirteen, fourteen, fifteen ... great job!" says therapist Carol Kuebel, counting aloud and praising them when a higher number is reached.

They try again and see if they can beat the previous number, full of smiles while getting praise for a job well done. The last highest count for Zach was 60. It varies between 30 and 60 currently, depending on how they feel.

While counting continues for Luke, Zach tries to hang onto a horse cutout with the help of his therapist and place it into the correct spot on a puzzle board in an exercise practicing gripping and holding objects.

Their occupational therapists use various exercises to develop the smaller muscles in the body that belong to the hands, fingers, face, feet and toes.

Speech therapy helps them develop more control of their mouth muscles and jaws, which helps improve their speech, communication skills and eating abilities. This therapy helps a little with their gag reflex, but it is very unlikely they will be able to go off their G-Tubes. The twins have syllables down; now comes the pronunciation work so those outside the family can understand what they are trying to communicate.

There is also special equipment aiding in their communication that they use at school. Zach uses one such device that can be recorded with a message that plays each time he presses the large yellow button with his hand or head, depending on where it is mounted.

Luke and Zach have difficulties absorbing and processing sensory information. Many times they have to look away as it is too much to deal with, but they are improving, making and keeping eye contact for a few seconds before they turn their heads away.

To help with this, they have also had sensory therapy since 2 months of age. This therapy helps patients absorb sensory information by teaching the brain how to sort, organize and process sensations received and attach meaning to them from past experiences.

At Blazing Prairie Stars in Maple Park, the twins go for hippotherapy once a week.

A three-person team is in action during a hippotherapy session. A licensed physical therapist works with them on different exercises while riding a horse led around an enclosed ring. The therapy helps those with poor head and trunk control by strengthening postural muscles. The movement of the horse is used as an additional therapeutic tool to help improve balance and coordination

A new hope

The therapy that has made the largest impact on the lives of Luke, Zach and their family, though, is hyperbaric oxygen therapy, or HBOT.

It is not a commonly used therapy for cerebral palsy because medical reports can't explain exactly why and how it works, but it is gaining acceptance among parents of children with cerebral palsy because most are showing improvements over short periods of time.

Some doctors call it experimental, while parents call it a miracle. The procedure consists of being treated with 100 percent pressurized oxygen, which in Luke and Zach's case jumpstarted the dialog between their brains and muscles, according to their parents.

Over the past two years, they have had over 200 treatments, resulting in huge gains in their abilities ranging from speech to physical, Kerri says.

Visible advances in their physical and cognitive abilities have appeared that would have taken years of therapy - or more - to materialize.

In the last two years, Kerri and Scott said supplementing conventional therapy with HBOT is leading to the miracles they have been praying six long years for. The thought of the twins possibly being able to walk someday seems a bit closer.