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Blog Entry 3: 4/29/14

 

Hello there,

So a lot of people seem curious as to how I drive. I've been asked many questions on the  subject so I figured I'd bring it up here.


I got my truck a couple years ago, and it has been by far the coolest purchase I've ever made. Because of my little red truck I've been able to drive myself to work, school, and most importantly go joy riding to the next town with some friends for a concert.


I'll admit it was a process to get this ball rolling. We had debated over trucks vs. vans and almost everything in between. Cars proved to be impractical and vans seemed expensive. So eventually after weeks of searching, my dad and I stumbled across a beautiful cherry red truck. We knew the moment we saw it that that would be the one that worked. So I signed some paperwork and presto, I was the proud owner of a ford ranger.

 

The only problem was that I've never actually driven before. It seems completely backwards to buy a truck without having ever been behind the wheel, but it seemed the only solution. I needed specialized equipment installed in the truck to drive it, and I can't install all of that without buying something. So I bought it and hoped for the best. I had petal extenders, and for lack of a better word a booster seat built into the driver's seat. Then I had a wheelchair lift installed into the bed of the truck. After I hook my chair into the lift, I can hop into the driver's seat, and operate my backseat robot with a remote. It's a pretty sweet setup. So a few scratches and a speeding ticket later I'm on the road! To be honest it hasn't always worked like a charm, but it does the trick and I wouldn't trade the freedom my truck gives me for anything. 

 
As always feel free to comment or email me about anything, morquio related or not.
Have a good one,


Carol 

 

 

 

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Blog entry 2: 4/25/14

 

 

Hello everyone!
We honestly don't have any earth shattering news to shout about as far as morquio goes, so we thought we'd take this opportunity to check in with you guys. We'd love to have this blog be an interactive and social place for the morquio community to get together and talk about everything and anything. So with that said, how's your week going? What have you been obsessing over lately?
We've added a comment section to the blog, so you can share your thoughts here. Your comment can be public or private if you wish.
Look forward to hearing from you!

 

Have a good one, and check back next week for a new blog!
Sneak peek for next week's blog:
We'll answer some of the most asked questions


 

 

Question:

 

So my wife and I just found out that our son will need surgery on his neck. It's a major procedure and just the thought of it terrifies us. My boy is only 7...how can we explain all of this to him? The last thing I want to do is scare him, but I how do you sugar coat that?


I'm just wondering what some other parents have done in this situation... Any guidance would be great.

 

Thanks- Concerned father


 

Question: Hi,

 

My daughter was just recently diagnosed with morquio. We just celebrated her 5th birthday, and next year she's going to start 1st grade. I'm concerned about her and how the other children will look at her. I've debated about going into her class to explain to her classmates and her teacher about her condition, but I'm not sure if I should or not. If anyone has any advice it would be greatly appreciated.

 

Thanks-


 

Question: Hi guys!


I'm a 22 year old woman with morquio and I've always wanted to have children. I was just wondering what are the possible risks in carrying a pregnancy to the full term.


Thank you so much!

 


 

 

 

 

 

 

 

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