Making strides

Young survivor learns to walk, function

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— Six years ago Thursday, Ellie Ann Zwak came home to Steamboat Springs after six hours of open-heart surgery and a harrowing cardiac arrest in a Denver hospital. A surgeon pumped her tiny, patched-up heart by hand for nearly two hours. Doctors told her parents, Audrey and Shawn Zwak of Steamboat, that Ellie had a 1 percent chance of living. She survived. At the time, Ellie was 8 months old.

Now 6, Ellie is a first-grader at Strawberry Park Elementary School. Because of oxygen loss to her brain during the cardiac arrest, she is legally blind and has difficulty developing muscle tone. She has used a wheelchair her entire life.

Yesterday, the Pilot & Today told the story of that awful trauma six years ago, and how Ellie came home with her family for Christmas. Today, in the second of three installments, the Today will look at the therapy Ellie does every day to improve her motor skills and cognition, and at the remarkable leaps she is making.

Learning to plan

Standing in front of a big plastic tub filled with brightly colored balls and a soft yellow doll, Ellie Zwak, 6, had one question for her physical therapist.

"How do I get inside?" the first-grader asked, gripping the sides of the tub for support.

"I don't know," Peggy Hoff replied. "That's up to you, Ellie."

Hoff works with several children at Strawberry Park Elementary School in Steamboat. She sees Ellie every Tuesday and Thursday for physical therapy, in a room filled with toys and exercise materials, next to the school's main office.

"One of the things we work on is how to figure out motor skills -- what I call motor planning," Hoff said.

For Ellie, that means learning new coordination skills while struggling to use muscles that are slow to develop.

Before she reached the tub of balls, Hoff asked her to climb up an inclined wedge of padded material similar to a gym mat. The effort took a lot out of Ellie, but not enough to make her forget an upcoming holiday.

"Rockin' a-round, the Christ-mas tree ..." Ellie sang as she pulled herself up the wedge.

When Hoff helped lift her into the rainbow of balls, Ellie laughed in delight.

"Red! Blue! Yellow!" she said, calling out the color of each ball after holding it close to her eyes so she could see it. Then Ellie found the doll. "It's a snake, a snake!"

Although the workouts are difficult for Ellie, she has a lot of support at the elementary school.

"Get your nose up, girl!" cheered paraprofessional Emily Schwall, as Ellie attempted to crawl on her belly inside a carpeted tube then roll the tube across the room with her body.

An aide at Strawberry Park, Schwall has worked closely with Ellie for about a year. Later in the day, she helped Ellie get to gym class, where local instructors led first-graders in aerobic dancing.

Ellie could not do much of the dancing, and she needed a lot of help from Schwall to participate in relays across the gym floor. But physical education teacher Bo Yennie said he was noticing significant improvement in Ellie's abilities.

"Things seem to be clicking for her a lot lately, as far as moving around," Yennie said.

Fallout from Fallot

Dr. David Miller, a pediatric cardiologist based in Denver who has worked with Ellie since she was born, said there is "not much chance" Ellie will need heart surgery again.

"She's fairly stable from the heart standpoint," Miller said this week. "Her biggest issues are with her neurological development."

Shortly after she was born, Ellie was diagnosed with Tet--ralogy of Fallot (pronounced "fah-low") a rare disorder of the heart that, in her case, involved a narrow right artery and a hole between the two blood-pumping ventricles.

According to the Children's Hospital of Wisconsin, Tet--ralogy of Fallot occurs in only three to six of every 10,000 births.

Miller said he sees Ellie about once a year, to look at her heart with an ultrasound and make sure the sutures are growing along with the organ and allowing for increased blood pumping as Ellie gets bigger.

Miller said he enjoys his time with Ellie.

"She's got a great personality," Miller said. "She always gives me a hug when I see her."

Dr. Ron Famiglietti, a pediatrician at Pediatrics of Steamboat, has also cared for Ellie since she was born. He said the heart disorder and Ellie's cardiac arrest after surgery make her a unique patient, who constantly exceeds expectations with her development.

"We were surprised to see her come out of the hospital after the surgery at all -- we're very happy with the progress she's made," Famiglietti said. "To watch somebody like her just excel is what makes me want to come into work every day."

Both doctors said as long as she keeps working hard in physical and occupational therapy, they expect Ellie to continue making strides with her motor skills and cognition.

"For kids, their brains are still developing and growing, so we sometimes see these gradual, remarkable improvements over a number of years," Miller said. "Kids are resilient in so many ways."

First steps

On Thursday, Ellie showed Hoff a new pair of leg braces she got in Denver earlier in the week.

"You've got wild horses on your braces now," Hoff said with a smile. The braces support Ellie's ankles and lower legs, and they need to be re-fitted or replaced as she grows.

They are especially helpful now -- about a month ago, Ellie began walking on her own.

"At the beginning of the year, she was standing," said paraprofessional Barb Smith, who has worked at Strawberry Park for 8 years and helps Ellie with her therapy, which includes riding a modified tricycle around the school's arcade. "Then one day, it was like she just decided -- 'I want to walk' -- and there she went."

Audrey Zwak, Ellie's mother, said a breakthrough came during this year's Halloween event on Lincoln Avenue.

When Ellie got behind her wheelchair and began to push it, friends of the family were surprised at the achievement.

Hearing the surprised voices was all the attention-loving Ellie needed.

"She started swinging her hips and strutting around," Zwak said, sashaying across the family living room to demonstrate Ellie's style.

Ellie's first-grade teacher, Christine Gautreaux, said Ellie now walks significant distances without her wheelchair.

"She walks all the way from here to the computer lab, which is across the school," Gautreaux said in her classroom Tuesday. "She'll kind of push your hand away -- she doesn't want you to help her."

Miller last saw Ellie in August. Upon hearing that she is learning to walk, he credited her "wonderful family" and expressed excitement, but not surprise.

"She's really been a miracle child all along," he said. "She's surprised us at several critical junctures of her life -- she's a kid I'll never forget."


-- To reach Mike Lawrence, call 871-4203 or e-mail mlawrence@steamboatpilot.com

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