New year, new campaign, new drug regimen

C. in the hydro pool a week ago

Last week, C. had her first hydro session since being hospitalized. We were all blown away to see her float with her usual finesse as if she hadn't just been through a 3 week hospitalization for status epilepticus.

 

And the previous day, I gave her THC for a sudden seizure surge. That's happened a few times lately. Occasionally she has a fever so I only give her Advil to control them. But with her status experience still so fresh, each increase in seizures is unsettling. 

 

I've been busy writing about my pet peeve: institutionalization of people with disabilities. As I've shouted from the rooftops, that practice is rampant and accepted in these here parts.

 

During C.'s hospitalization, one of the doctors on the team suggested to the Hubby: "Why don't you put her in some sort of medical facility?" That was after the team had reined in her seizures with a cocktail of powerful drugs that left her near-comatose. We were wondering how we'd care for her at home in that state. The "send her away" suggestion was that doctor's response. (Here's what happened afterwards.)
 

I was encouraged to learn about a new local grass-roots movement against institutionalization. Its specific goal is to win government-funded personal aides for people with disabilities along with the right to live wherever they choose to within the community. Exactly what I've been hankering for! Our national center for human rights for people with disabilities is promoting the campaign.
 

A creative approach to achieving that is to dissuade those benevolent people who volunteer at and donate to such institutions from doing so. Lumos - founded by J.K. Rowling - is at the forefront:of that push.

Here is what Georgette Mulheir, Chief Executive of Lumos had to say about that: 

"More than 80 percent of children in the world’s orphanages have at least one living parent and most have relatives. They should be at home with their families, not in institutions. What orphanage children and their parents really need is to be reunited, with all the supports and services that will enable those families - no matter how poor - to give their children what they need to thrive and reach their full potential.

J.K. Rowling, the founder of Lumos, who has spoken out against orphan voluntoursim frequently on Twitter, could not have put it better: “ Voluntourism is one of drivers of family break up in very poor countries. It incentivizes ‘orphanages’ that are run as businesses. Globally poverty is the no. 1 reason that children are institutionalized. Well-intentioned Westerners supporting orphanages perpetuate this highly damaging system and encourage the creation of more institutions as money magnets.”

Yet evidence suggests the number of children going into orphanages in some parts of the world is increasing."

Wishing everyone a happy, healthy, seizure-free and de-insitutionalized 2018!

P.S. Last night I began giving C. a daily dose of THC. For the next couple of days, it'll be just one drop 3x/day but I'm planning to raise it gradually. I'm winging this; no doctor has recommended it but Elizabeth Aquino - my cannabis guru - gives it to her Sophie with CBD.

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