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He grew reluctant to eat or drink, which left him not only weak but also not getting the right dose of conventional medicine hidden in his food. The day the movers arrived, Preston sat on the grass holding his grandmother’s hand while the blinkies attacked.
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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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There have been times Blake would have a seizure every half hour, and his mother, Stacy Lynch, would worry how he would get through the night.
“Why did we even come down here if he’s not going to take it!?” she snaps.
Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
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July 23 Physicians assistant Tom Dishion talks to Ana Watson and Milly Raynor at Iron Horse Pediatrics in Colorado Springs. Preston has been running a fever for three days, today at a steady 101.9. He has been complaining about his feeding button: “Out, out,” he says. They went from the clinic to an X-ray at Memorial Hospital to check the feeding tube placement.
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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“He needs to learn to take it!” Ana says.
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