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July 16 Recovery room nurse Breanne Hagihara explains to Ana Watson that she will have to use extra care for the next six weeks as Preston’s incision for his gastrostomy tube heals and the permanent button can be put in at Children’s Hospital in Aurora.
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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“You were being a big, mean shark. It’s OK.”
It was about a month before the move away from their little brick house in Greensboro, N.C., and, sometime in the night before, Preston left his own bed and sleepwalked into Ana’s. Sydney was already there. When Ana woke before dawn, she was nestled between children.
Four decades ago, a scientist in Utah envisioned a time when a medicine made from marijuana might be available at the pharmacy...
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“Silly mommy,” he says quietly.
“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’?”
May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
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The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
“Yes,” Ana sighs, “we’ve tried everything.”
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She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
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Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
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