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“The journey” is the title of this new section in the book.
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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July 3 Preston tries his hardest to get this box into the family’s new home. Finally, he is able to help unload the trailer, which has held his complete attention as it followed his family across the country on the trip to Colorado.
“We have a special squirt-squirt we need to do, OK? You need to be a big boy,” she said.
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July 25 Preston isn’t feeling well and took to the couch, but sister Sydney decided he needed a little cheering up by playing swoosh with his blanket.
As the namesake for the severe form of epilepsy that afflicts many children arriving in Colorado for medical marijuana treatment, Dravet said parents often ask her about whether moving to Colorado is worth it. She tells them to wait...
August 6 Preston’s grandmother, Milly Raynor, supports his head as she tries to untangle him from a hose he tripped over, and a seizure kicks in. The pain from the fall while playing with a water slide appears to have caused the grand mal seizure. A doctor’s appointment the next day reveals a broken bone in his foot.
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But the results were ultimately even less conclusive.
November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
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A faint smell of cow manure wafts in the breeze as Ana pulls her minivan up to a house in eastern Boulder County.
There are times, Ana said, when she can almost see what Preston could become if the seizures would just let him.
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The shaking calmed.
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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
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