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After the movers left, Preston’s blinkies hit even worse. Drool dribbled off his chin and onto his T-shirt. Milly, who was watching him while Ana packed up the last things, sensed a bigger seizure building. She fanned Preston, hoping to calm the blinking.
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The only hope left
Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
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“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
July 7 Preston, curious about everything, watches his new pediatrician, Dr. Edward Maynard, adding notes from the 12-year-old’s first visit and examination at Iron Horse Pediatrics in Colorado Springs. Doctors, hospitals, nurses and tests have been a part of Preston’s life since he was diagnosed with Dravet syndrome as a baby.
April 15 Ana Watson keeps a sharp eye as Preston goes into a grand mal seizure on the frontage road near Castle Rock on Interstate 25 on their way from Colorado Springs to see Jason Cranford at his Rifle Mountain Dispensary grow in Boulder. Ana is visiting from North Carolina to change her residency and apply for a medical marijuana red card for Preson.
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Overall cost varies based on the amount a child takes, which itself varies based on how big the child is. Different providers also charge different prices. For kids using Charlotte’s Web, a typical family spends about $300 a month for CBD oil.
Her new friends in Colorado — parents who, like her, came to the state seeking hope through cannabis — cheered on her social media updates.
Smaller numbers of children in California and other states have also begun to use marijuana to treat seizures. But what makes Colorado the epicenter is the state’s large medical marijuana system, which allows for kids to be registered patients; the growing community of families with sick children; and the feedback loop of publicity that surrounds the treatment. Every happy story about a family seeing success with cannabis in Colorado pushes another family to move here.
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July 17 A nurse stops in for a quick check on Preston’s incisions and tube during his EEG while he is snuggling with his mother, Ana Watson, at Children’s Hospital in Aurora.
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The toy was a Slip ‘N Slide, on which he and his sister, Sydney, were supposed to be shooting across the tarp and under an inflatable shark’s mouth that held a spraying hose. Instead, Preston grabbed the hose and became the shark.
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At the end of their first visit, Dr. Kelly Knupp, Preston’s new neurologist at Children’s, suggested the EEG so that the hospital could have some starting record of Preston’s brain activity. The timing worked; Preston was already in the hospital, after the feeding tube surgery the day before.
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