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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
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October 8 The Realm of Caring drying warehouse is slowly filled with the plants from the 17-acre grow plot. This strain of marijuana has less than 0.3 percent THC and qualifies as hemp under Colorado’s marijuana laws.
“But they don’t seem to me to be as long,” Ana said.
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A handful of organizations have sprouted in the past couple of years to offer support to parents moving to Colorado and those already here. Communities of families have grown up to provide advice and encouragement and a happy source of friendship.
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.
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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Related: Every patient’s Dravet syndrome is a little different
“Why did we even come down here if he’s not going to take it!?” she snaps.
His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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Turn the page, and there’s a picture of Preston in a white onesie. Then a picture of Preston sitting in a kid-sized Jeep.
July 13 Tami King and Ana Watson recheck dosing measurements for the CBD oil that they hope will help control Preston’s seizures.
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October 26 Preston has been eyeing his sister’s bike for a long time, taking every chance to sit on it when he could. On his 13th birthday, he finally has one of his own, with big training wheels.
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Four months after they arrived in Colorado — one of hundreds of desperate families moving here for medical marijuana for their children — the seizures that restrain Preston at the developmental level of a 2-year-old have calmed. A tumultuous beginning has given way to a month-long stretch without a grand mal seizure.
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