Introducing the new Legendaire!! *wild applause*
It's much hotter today than it was yesterday and tomorrow is supposedly getting hotter. My mom and I have pooled our meager resources and discovered we have enough money to see a movie, so tomorrow we're going to the air conditioned movie theatre to reprieve. I think we'll pick The Da Vinci Code because it's the longest.
So, yesterday my mom and I went to a "Show & Tell" at George Pearson Hospital put on by the respiratory outreach programme. It was to show off and demonstrate the new ventilators and basically to meet and socialise with the other people on vents in the area. Naturally, nearly everyone was about 50 years older than me, but there were a few young'ns. I also took some pleasure out of the fact that I was clearly the most physical of the bunch; I can move my feet! I'm like, the Steve Nash of the ventilator crowd.
So, the new vents are REALLY cool. It's small and only weighs 7.5 lbs!!! So exciting. Apparently, I've gotten high priority on getting one, whenever the government coughs up the money so they can buy more than 4. They cost $14,000, but they're so pretty.
I handed over the article I wrote for the newsletter, which was greeted by much jubilation, since it seems they're always trying to coerce people into writing things. I guess I'll have to think up some new ideas so I can write something else!
Oh, there was one really cool thing they talked about at the meeting. There was a young quad there, he looked to be about my age or maybe a little younger, and in the spring he went down to the States to have this experimental surgery done, called phrenetic nerve stimulation, where they basically use electrodes to send a shock to his phrenetic nerve, which stimulates his diaphragm to he inhales. It's like... an internal ventilator. He was weened off his vent and hasn't used it since March! He doesn't even need suctions anymore because he's breathing through his mouth and nose and that's so much healthier for your lungs. It was pretty amazing. He had to go to Cleveland for the surgery and pay for it himself (well, his family did) but it weilded some pretty incredible results. Apparently Christopher Reeves was the first one to have the procedure done. Unfortunately, I can't have that done, since I have muscular dystrophy and the diaphragm is a muscle, yada yada yada. It's too bad, though, because I REALLY hate suctioning.
AND I won a door prize. I got a picnic cooler bag and Twistables Crayola Crayons, woo hoo!
Today my mom and I went out all afternoon because it was too hot here. First we went to the library and I stocked up on some summer reading. The books that are unread on my bookshelves are currently way too daunting to read since I think my brain is dehydrated. Anything that says "Pulitzer Prize Winner" on the cover is going to have to wait until September. I started reading The Other Bolelyn Sister this afternoon when we went to Starbucks after the library and so far it's a really easy read.
Ugh, there were the two most annoying people on the PLANET sitting behind us at Starbucks. We went to what I call the "other Starbucks" which is a block down from "our Starbucks" so we could sit outside under the trees and read, and there was a guy and a girl sitting at a table talking SO loud about the most inane things the whole time, I wanted to scream. Usually, I don't care because I can't hear very well and so I can just read peacefully without having to be subjected to the talk of stupid people, but they were just too loud. And did I mention stupid? When they shut up for a few seconds, the silence actually echoed.
I watched Cocktail tonight for the first time! I may have been the only child of the 80's that had never seen that movie. Seeing Elizabeth Shue made me want to watch Adventures in Babysitting, though. Did you know they're remaking that??? It's a classic!! With war in the Middle East, global warming and Raven Simone replacing Elizabeth Shue as the best babysitter EVER, the world is going to hell in a handbasket.
So, yesterday my mom and I went to a "Show & Tell" at George Pearson Hospital put on by the respiratory outreach programme. It was to show off and demonstrate the new ventilators and basically to meet and socialise with the other people on vents in the area. Naturally, nearly everyone was about 50 years older than me, but there were a few young'ns. I also took some pleasure out of the fact that I was clearly the most physical of the bunch; I can move my feet! I'm like, the Steve Nash of the ventilator crowd.
So, the new vents are REALLY cool. It's small and only weighs 7.5 lbs!!! So exciting. Apparently, I've gotten high priority on getting one, whenever the government coughs up the money so they can buy more than 4. They cost $14,000, but they're so pretty.
I handed over the article I wrote for the newsletter, which was greeted by much jubilation, since it seems they're always trying to coerce people into writing things. I guess I'll have to think up some new ideas so I can write something else!
Oh, there was one really cool thing they talked about at the meeting. There was a young quad there, he looked to be about my age or maybe a little younger, and in the spring he went down to the States to have this experimental surgery done, called phrenetic nerve stimulation, where they basically use electrodes to send a shock to his phrenetic nerve, which stimulates his diaphragm to he inhales. It's like... an internal ventilator. He was weened off his vent and hasn't used it since March! He doesn't even need suctions anymore because he's breathing through his mouth and nose and that's so much healthier for your lungs. It was pretty amazing. He had to go to Cleveland for the surgery and pay for it himself (well, his family did) but it weilded some pretty incredible results. Apparently Christopher Reeves was the first one to have the procedure done. Unfortunately, I can't have that done, since I have muscular dystrophy and the diaphragm is a muscle, yada yada yada. It's too bad, though, because I REALLY hate suctioning.
AND I won a door prize. I got a picnic cooler bag and Twistables Crayola Crayons, woo hoo!
Today my mom and I went out all afternoon because it was too hot here. First we went to the library and I stocked up on some summer reading. The books that are unread on my bookshelves are currently way too daunting to read since I think my brain is dehydrated. Anything that says "Pulitzer Prize Winner" on the cover is going to have to wait until September. I started reading The Other Bolelyn Sister this afternoon when we went to Starbucks after the library and so far it's a really easy read.
Ugh, there were the two most annoying people on the PLANET sitting behind us at Starbucks. We went to what I call the "other Starbucks" which is a block down from "our Starbucks" so we could sit outside under the trees and read, and there was a guy and a girl sitting at a table talking SO loud about the most inane things the whole time, I wanted to scream. Usually, I don't care because I can't hear very well and so I can just read peacefully without having to be subjected to the talk of stupid people, but they were just too loud. And did I mention stupid? When they shut up for a few seconds, the silence actually echoed.
I watched Cocktail tonight for the first time! I may have been the only child of the 80's that had never seen that movie. Seeing Elizabeth Shue made me want to watch Adventures in Babysitting, though. Did you know they're remaking that??? It's a classic!! With war in the Middle East, global warming and Raven Simone replacing Elizabeth Shue as the best babysitter EVER, the world is going to hell in a handbasket.