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The migration to Colorado by families of sick children seeking medical marijuana is fueled by hope, not science. Little is known about the treatment’s effects, and researchers suggest that some parents see progress because they’re desperate to see it.
July 4 “Paw Paw” Don Raynor, crossing off projects on his to- do list, is just another chance for Preston to get a horsey ride. With most of the moving and assembling done, Don will be leaving his daughter and grandson in the morning for the long ride back to North Carolina.
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July 3 Preston gives his mother a suspicious look as she tries to offer him ice cream with an M&M on top. He knows she is trying to give him his afternoon medications; after years of this working for their family, Preston has stopped falling for the ruse and fights it every time.
Physicians assistant Tom Dishion talks to Ana
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“I know!” Ana pleads. “I’m sorry!”
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Ana takes the family to the shore
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Preston helps “Paw Paw” Don Raynor
“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.
It sunds so much better than calling it an ordeal.
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“We can’t force him to take it!” Milly shouts.
July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
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After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
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