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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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“That would be really nice if he got that far,” he said, “but there’s not much evidence right now he’s moving toward that.”
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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.
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October 8 Penn Mattison and Shawn McCafferty load tall holding racks with cannabis plants to be hauled to the drying warehouse during the Realm of Caring hemp harvest in eastern Colorado.
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“The journey” is the title of this new section in the book.
“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
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On Apr. 7, 2015, the Idaho House approved a CBD oil bill by a close 39-30 vote. Named for 11-year-old epilepsy patient Alexis Carey, the legislation would allow parents to possess up to 32 fluid ounces of liquid cannabidiol (max 15% CBD and .03% THC) to administer to chilldren who suffer from seizure disorders. On Apr. 16, Gov. Butch Otter vetoed the bill. However, he says he'll issue an executive order requiring the state's Department of Health and Welfare to study the effects of CBD oil pn epilepsy; this may lead to accees to the oil for children. But Idaho at this point sode not qualify as a CBD-legal state.
At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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When he looked at the exodus of families heading to Colorado, Greenwood worried about the people who might prey on their desperation. But he also worried about the enthusiasm that might spring from their hope. He had warned Ana strongly against taking Preston off his other seizure drugs.
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August 6 Preston cries as Milly and his nurse, Chelle Bennett, try to remove his wet clothes and warm him with blankets. The pain from a fall while he was playing with a water slide appears to have caused a grand mal seizure.
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