Thursday, March 12, 2009

Smile surgery: Domo on Day 3

The day I met 9-year-old Dominque Piotrowski, she approached me first.

I'd been standing awkwardly in the shadows for the last half of her music class, a failed attempt to minimize distraction to her classmates.

"Are you the reporter who's going to write the story?" she chirped. We immediately struck up conversation, looking each other right in the eyes.

I hardly even noticed she couldn't smile. She has a great laugh.

Covering education, I know all about interviewing kids, and it's usually tough. Dominque (pronounced "Dom-en-EEK," and hereafter Domo, said "Dahm-o") is noticeably old for her age. Not knowing her family well, it's hard to tell why, but I'm inclined to believe that having Moebius syndrome, a rare neurological condition -- and her family's frankness -- has a lot to do with it.

Anyone unfamiliar with Domo's case can catch up online:
02/15 Looking forward to her smile (featuring video)
03/11 Family all smiles following surgery
03/12 Doctor: 'Smile surgery' looking good for FH girl
Clearly Domo's father, Quentin, has been instrumental in my coverage. He's told me his ultimate goal is to start a foundation for Moebius syndrome research. This blog will help me relay his daughter's progress even when there's no room in the paper.

Today Quentin called me sounding tired but calm. "She's starting to eat -- pizza and doughnuts that she wasn't supposed to have, but that was all she was wanting to eat. We snuck in a piece of pizza and some doughnuts."

At the Piotrowski home a month ago, Domo filled much of our first interview with opinions. When she's animated -- which is often -- hand gestures and body movements compensate for her lack of facial expression. Hearing that she overcame immobilizing pain to reject potatoes, broth, apple sauce, Jello and ice cream didn't surprise me.

"She didn't want anything about that. She wanted some solids," he continued. I asked if she's able to chew. "She's able to chew but she has to be careful."

Earlier Dr. Ronald Zuker, who visits her room three times a day, switched her IV from morphine to codeine with Tylenol. She still feels significant pain in her thigh, where part of her gracilis muscle was removed for implantation in her face, but similar pain could last as long as six months, he said.

"It's going to be a long healing process for both areas," her father stressed. "She knows it and I'm very straight-forward with her and I'm not going to sugarcoat it, because if she finds out we're sugarcoating it we're in trouble."

"Dr. Zuker told her today, 'Guess what, come down off the drugs, get up, walk around, go to the bathroom, get walking and go shopping.' She's allowed to shop 'til she drops, they told her. We can take her out in a wheelchair. The end part, the shopping, was the selling point for my daughter. All of a sudden she was all perky and ready to cooperate with everybody instead of sluggish. She's ready to go."

Unfortunately Toronto's snow-cover kept the Piotrowski family in today. Instead they planned to check out a play room within The Hospital for Sick Children, geared entirely for children, that features crafts, video games and -- Domo's favorite -- Internet access.

Stay tuned...

-- Sandra M. Klepach, SKlepach@News-Herald.com

Above, Domo smiles at the biennial Moebius Syndrome Foundation Conference, recovers in Toronto with 2-year-old sister Aleena, and meets with Dr. Ronald Zuker before her 10 1/2-hour surgery Tuesday. Pictures provided by the Piotrowski family.

Quentin welcomes News-Herald readers to use Facebook to befriend him or Join the Cause for more updates and pictures.

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