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Preston’s journey
June 30 Ana Watson blocks the door to keep Preston inside during an interview to evaluate the type and amount of care he will need in Colorado. Jennifer White, a clinical supervising nurse with the Certified Nursing Assistant division, and Mike Quintana, account manager with MGA Home Healthcare, base their assessment on state guidelines to provide for Preston’s medical needs.
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Walking toward him, she had no idea of the frustration ahead, and no inkling of the discomfort she would inflict on them both in her effort to bring relief. All she knew as she looked toward her seizing son was that she held in her hands the latest, best chance to move his life forward.
In that time, Preston started feeding himself, using a fork without help. He pushed himself around on his sister’s two-wheel scooter without falling. He remembered to say “Please” and “Thank you.”
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“You think you’d get used to seeing him like this,” she said. “But it scares me to death every time.”
Recovery room nurse Breanne Hagihara
In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
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On the next page is a picture of Preston with his head swaddled in gauze, a thick bundle of electrical wires poking out of the top of the wrapping like a bizarre ponytail.
On Apr. 22, 2014, HB 843 passed the House Judiciary Committee by a 15-3 vote. The bill, sponsored by Republican Rep. Matt Gaetz, calls for "four regional orginizations around the state" to "grow, test and dispense" the oil. A patient registry would be created. Unlike other CBD legislation, HB 843 is not limited to seizure con***ions; patients with Parkinson's, Alzheimer's, PTSD and cancer would also qualify. It was passed by a 111-17 margin on May 1. The Senate version passed the bill by a 36-3 margin on May 2. Gov. Rick Scott signed th bill into law on June 16, making Florida the ninth state to legalize CBD oil.
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Charlotte Dravet’s message to parents is simple: Don’t move.
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In the next week, blinky seizures will overwhelm Preston each afternoon. A week after that, Ana will write on Facebook, “Preston started a new ratio oil yesterday higher THC, today only being on it for the second day we saw 70-80 percent seizure reduction!!! BAM!!!! Bite that seizures!!!!” And then a week after that, Preston will have three grand mals in a day. A roller coaster, Ana will call it.
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