Tuesday, September 26, 2006

Little girl suffering from seizures is getting ready for surgery!

Five-year-old Liza Sedlacek is wrapped in a prayer shawl.She is surrounded by about 20 people who gather at First Congregational Church in Greeley to summon prayers for her.Her father, Roger Sedlacek, keeps an arm around his wife, Allison, as she wipes away tears. Mason Sedlacek, 10, playfully elbows his sister, Ellery, 8, and then sits still, a sturdy support as she, too, wipes away tears and rests her head on his shoulder.

Liza seems oblivious to the conflicting emotions of hope and heartache choking the room.She breaks the solemnity when she hollers out, "Alan!" spotting one of her favorite people in the back of the room.In Alan's arms, Liza sways to a pianist's tune of "Jesus Loves Me" as if she knows He does.Liza brought these people together -- adults who she taught how to love again, believers whose faith she strengthened.

This is the last time they will see Liza before she is quarantined two weeks before a potentially life-saving brain surgery.As they say good-bye, they are left to wonder at what cost do the lessons from Liza flow? Why has the God who loves her so chosen to use her as His hammer and tool?Since she was 6 months old, Liza has fought seizures that threaten her life, suffering to a point where her father pleads for intervention from a higher power:

Please, God, fix her or take her.She has blessed people generations her senior, but now Liza is the one in need of a blessing. She was born with a rare medical condition called focal cortical dysplasia, which causes epileptic seizures.Liza was scheduled to undergo brain surgery in March 2007 at Children's Hospital in Denver. But the doctors feared she wouldn't last that long and bumped her up the list -- a blessed curse.

A successful operation could eliminate intense seizures that knock her out of bed nightly and shake her brain like an Etch-A-Sketch, erasing her abilities to talk and walk.A successful operation could also leave her blind or inflict learning disabilities.Just weeks away from Liza's big day, the questions beg to be asked: Who will Liza be after all this? Will she remain the child whose hazel eyes speak volumes of fear when she tries, but can't force the words from her mouth? Will she still have an affinity for music? Will she even survive?

Those who know Liza wonder about her fate, but, through her, they have already found answers to so much more."There is a God power guiding Liza," said her aunt, Lee Anne Butler.Maybe Liza's divine duty was to bring others joy through her pain? If so, the plan worked. Just ask those who, in tears, pray today for her healing.The map manBereket Habte, an electroencephalogram(EEG) technician at Children's Hospital, uses yellow measuring tape to guide red marks he colors in on Liza's head.

About a couple dozen electrodes will be glued onto each circle for a week of monitoring seizure activity in Liza's brain.Habte uses a Q-tip to vigorously cleanse the marked areas, distracting Liza from the Dora the Explorer cartoon she is watching on a portable DVD her grandparents bought just for these occasions.Liza looks to her mother."Oooweeeee," she groans."No, no owee," Allison reassures her.Her bottom lip begins trembling a few minutes later, which Allison warns is an early indication of an oncoming seizure.

The monitoring will capture what is happening inside when seizures begin.Liza has been through this step before. She was a candidate for surgery three and a half years ago but was removed from the list when doctors couldn't find where the seizures were originating in her brain.After trips to specialists across the country, doctors said Liza would have to find other ways to control her epilepsy.Finding a cure would become a dream postponed until early one morning while Liza was hospitalized again last December; Allison, who was dozing in Liza's room, was awakened by a tap on the shoulder.

Dr. Pramote Laoprasert, who happened to be the on-call doctor when Liza was admitted, said he knew what was wrong with her.He could fix her.The dark-haired, thin, humble neurologist from Thailand, who once took a hiatus to become a Buddhist monk but felt he was called to children such as Liza, is also known as the "map man."Dozens of children, including another child from Greeley, a 5-year-old boy, are on waiting lists with parents praying for the day he will lay hands on their children's brain scans.

From data procured from countless EEGs and brain monitoring sessions, Laoprasert searches for a seizure's focal point.Once he maps out the problem area, or areas in some cases, he teams with a surgeon in a two-part procedure to cut out the diseased brain.By the time the Sedlaceks met him, the special diets and medicines had failed Liza. Her grand mal seizures, one of the most difficult type, were lasting several hours. Her recovery from them was slower, and even she knew something was wrong when she would try to talk but nothing would come out.Roger recalls the look of fear in Liza's large, almond-shaped eyes.

Much data would confirm Laoprasert's suspicions in Liza's case. However, there was a gray area.Tests revealed signs of activity on the left, suggesting more than one focal point. With that possibility, Laoprasert couldn't guarantee the surgery would stop her seizures completely. But he was certain he could reduce them.The risks were grave either way. "If you don't control the seizures, you can predict the outcome.

She can die," Laoprasert said.He told the Sedlaceks he wouldn't decide for them. They had to consider if surgery was still worth the risk.They decided it was."I hope she doesn't hate me for this," Allison said.A dedicated motherAllison sees the world through the same almond-shaped eyes as Liza.Since Liza, the youngest of three Sedlacek children, had her first seizure as an infant, Allison has been her greatest advocate.She will second-guess doctors who insist on medications that give Liza undesirable side effects. And she is admittedly bossy when, on the umpteenth trip to the area emergency department, she knows how long of an intravenous drip is necessary before staff can even begin to decipher the small child's complicated history.

Liza has been on every floor of Children's Hospital, and Allison is on a first name basis with many of the employees."You know the drill," a nurse, Nancy Weston, said to her during preparation for the latest-round of monitoring.Caring for Liza became a full-time job for Allison. Liza's health was so fragile she stayed home when she had a cold.

The toll on the family was evident -- Ellery taught herself to read at 4; Mason, who was 5, acted out for attention; Roger dreaded coming home from work.Now there were talks again for a cure.But Allison could not bulldoze her way through this one. Her aggressive tendencies were met by a calm, soft-spoken Laoprasert, who would continually repeat: "Her case is not straightforward. You need to be patient."Patience would be a lesson to learn by the woman who was out to break all the rules."Allison is the salesperson-aggressive type.

She sold Mary Kay, and she was going to get that pink Cadillac," her sister, Butler, said.But Allison's priorities changed since Liza showed her a whole new world. She suddenly had to deal with fighting insurance for in-home schooling and learning how to access services she didn't know existed for children with special needs.After fumbling through by herself, Allison's new passion is to create a road map for parents who happen into this world.She now works with the Greeley-Evans School District 6 to teach seizure first aid.

She also started an epilepsy support group in Greeley. Allison recalls a recent 7 a.m. phone call from a mother in the group."How privileged I felt that she thought of me," Allison said.Butler admires her sister's newfound humility. "To see that type of personality change has really been a blessing," she said.Before surgery At 8 a.m. on a Wednesday in the surgery waiting room at Children's, Liza is again surrounded by people who love her.

Her aunt, Butler, grandparents, Mary Lou and Leo Weaver, their pastor, Larry Van Spriel, Roger and Allison try, unsuccessfully, to appear calm, making small talk. Liza is the only one who seems to be without distress.She plays in a dollhouse an hour before the first surgery, during which a portion of her skull will be removed and her brain attached with electrodes.Her family hovers nearby as she picks up a toy phone and speaks into it, "Hello? Hello?"Then, as if she receives a message from the other end, she says out loud, "Don't worry."

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