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April 13 Jessica Raynor, Preston’s aunt, reads him a bedtime story during a trip to Colorado Springs ahead of the family move. Ana, Jessica and Preston made the trip to Colorado to apply for Preston’s medical marijuana card.
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Preston gently touches his friend Hailey McGuire
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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
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“That,” she breathed back in, “was pain.”
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“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
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.
Soon, Jason hands Ana new bottles of cannabis oil. This time, he’s giving her one bottle of high-CBD oil and another bottle containing high-THC.
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October 7 Preston and Haleigh dance while Tami watches in the background. The families met at Milly’s house for dinner in order to save money on food and to get together for something other than emergencies.
July 4 “We’ll try something different,” Don Raynor says as he holds Preston’s mouth closed and massages his throat while Ana holds her son’s head to get Preston to swallow his medication. Preston has refused to take his meds without a fight for a solid week, and everyone is worried and exhausted by the efforts to get him to take them. This didn’t work either: He spit them all out.
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“I can’t be the parent who didn’t try,” said Janea Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.
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Ana Watson looks across the living room of the Colorado Springs house that still doesn’t feel quite like home and sees her son, Preston, sitting stiffly on a brand-new couch. His eyelids flutter, struggling against the seizures that have quaked through his brain every day since he was 3 months old.
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