SMA it FORWARD with CASHEL

Spinal Muscular Atrophy

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Update turned Blog

Posted by Cashel Gardner on October 1, 2012 at 8:15 AM

Update turned Blog......

Ever feel like there is something crawling on you?


I had a Great time in my chair tonight and helping decorating! Thank You everyone for your fun wishes to me. We made a graveyard in the front entryway. We glued tombstones to the wall and ran purple lights with a fence and straw along the wall and ground, it looks really cool, my mom is going to put a little fogger in it too. I got to tell you though, I think the most fun I had was watching my mom have to keep chasing the cats out of all her stuff! They would get in the straw and drag it all over the floor and we almost had a scene from Christmas Vacation, Loki started chewing on one of the strand of lights! LOL (:O


Now to answer a couple questions from the audience....

What are we going to dress up as for Halloween?

We haven't dressed up the last 3 years because we can't go trick or treating in our neighborhood anymore. Our wheelchairs are too big and we can't get to the doors. We don't eat by mouth anyway so we don't need the candy anyway. We used to like to go out and just see all the kids in costumes but no one really goes out anymore, it kind of got boring. So, we started a new tradition 3 years ago, we move out to the couches in the living room, turn off all the lights and watch a scary movie on the big screen TV! Scary movies to us were Ghostbusters the first year, Beetlejuice was 2nd and last year we moved up a little scarier to The Village. That was scary but ended up not scary :D Not sure what we will watch this year....... BUT, I do think we are going to dress up and go to Emily's Girl Scout Halloween Event, it is called Trunk or Treat and it is in the parking lot of the cemetery down the street! That sounds fun and kind of spooky!


Why do I stay in bed all the time?

Bed vs. Wheelchair
There are good and bad sides to everything same goes to the question of laying flat in bed or sitting up in a chair. I actually prefer to stay flat in my bed. I love having my wheelchair it is fun, I love moving around and going places but on a daily basis I choose bed (come on, you know wish you could too ;) ) On my bed I have my TV and computer, which if you know even just a little about me you know I am on my computer 24/7. My mom lets me keep it on all night. That started over a year ago when for some strange reason my tonsils swelled up and I couldn't talk for about a month. So, at night my mom left my computer on in case I needed her for anything I could use it to yell for her. Eventually my tonsils went back to normal but I still just kept my computer on all night anyway. I usually don’t go to bed till around 4am but if I do wake up I check my page. (Can you say obsessed?) LOL I am getting a Dynavox set on my wheelchair but it is limited on what it can do. 2nd reason I don’t go in my chair on a daily basis is it hurt my back after a while. I have no muscle so it puts a lot of pressure on my bones. My mom put an egg create mattress on it and it is MUCH BETTER. And last is because I don’t have a heater for my vent on the chair. The heater warms and moistens the air that goes in my lungs so they don’t dry out and cause a plug*


Well, I hope you enjoyed reading my blog; I am really enjoying writing them. If you have anything you would like to know or want me to write about in my next blog just let me know. FYI, my next outing will be Friday Oct 5th, we are going to Justin Timberlake’s Celebrity Golf Tournament! I can’t wait! Thank You ALL for being so caring and supportive to me and my work.
God Bless you and your families,
Love, Cashel*


*A plug is when the mucus in your lungs get dried up and it actually plugs your airway and you can’t breathe. Some plugs can be suctioned out easily but some get stuck and can be VERY dangerous.

*Cashel is pronounced Cash ul (most think it is Ca shell) hope that helps :)


 

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