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MJ's Journal Page 
to MJ's Update Web Page. It has been provided to keep people updated about MJ and her travels and health. MJ has Spinal Muscular Atrophy, Type 1. To learn more about SMA please visit SMA Support
If you want to support fundraising for SMA, please visit Marshall's Miles , Payton's Pals, FightSMA, SMA Foundation , Miracle for Madison and Friends , SMA Support, or Connecticut Chapter of FSMA !! Thanks!
MJ also received a beautiful cross stitched quilt from Cole's quilts ! If you know how to cross stitch or know someone who does, and have time, please volunteer to do a quilt square for one or more of the kids!
Want to view more pictures of MJ??
Visit MJ's Picture Page
MJ's other webpages are
MJ's page at Our-SMA-Angels
Check it out!
MJ has started her own organization. It is for children who have been diagnosed with SMA. Please visit B4SMA or the B4SMA Journal if you wish to know more about the organization! Thank you!
Check out MJ's friends page to visit MJ's friends!
Please check out Our-SMA-Angels to see more MJ's friends with SMA!
My Wish
Rascal Flatts
I hope that days come easy and moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
If it's cold outside, show the world the warmth of your smile,
More than anything, more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
Oh More than anything, Yeah, and more than anything,
My wish, for you, is that this life becomes all that you want it,
To your dreams stay big, and your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.
I dedicate the following song to Emma Clare, Forever 3 years old! Love you!
If Heaven
By: Andy Griggs
If heaven was an hour, it would be twilight
When the fireflies start dancin on the lawn
And suppers on the stove and mammas laughin
And everybody’s workin day is done
If heaven was a town it would be my town
Oh…on a summer day in 1985
And everything I wanted is out there waiting
And everyone I loved is still alive
Chorus:
Don’t cry a tear for me now baby
There comes a time we all must say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
If heaven was a pie it would be cherry
So, Cool and sweet and heavy on the tongue
And just one bite would satisfy your hunger
And there’d always be enough for everyone
If heaven was a train it sure would be a fast one
that could take this weary traveler round the bend
if heaven was a tear it'd be my last one
And you’d be in my arms again
Chorus:
Don’t cry a tear for me now baby
There comes a time we must all say goodbye
And if that’s what heavens made of
You know I, I ain’t afraid to die
Yea, if that’s what heavens made of
You know I, I ain’t afraid to die…
give MJ more *HUGS*
Get hugs of your own
The first song playing goes with the current update.
Each week, I will dedicate the song to someone or something,
This week it is dedicated to living life to the fullest
Don't Forget to
 
Journal
Sunday, September 28, 2008 7:48 PM CDT 14 Classes, 1 Infection, & 6 Words
Hi everyone:
Another week and another update, can you believe it. I am trying to stay up-to date, but I am busy.
So, I did get another V-Cue mattress back. The bad news is that there are very few V-Cue mattresses left in the country, so once they are gone, they are gone. Now , I have to start shopping for something similar from another company. The temporary mattress was okay for me but Brenda hated it. It took Brenda a lot longer to get me ready for anything because I just sank into the mattress. I did sleep better so that was helpful.
Monday I went and saw a new family doctor. I was impressed and liked her (still not as great as Dr. Proskin). I told her why I picked her and what I expected from her and she was okay with it. We talked about all of my meds that I currently take and she was familiar with most of them and agreed with me taking them. I had an EKG done and it was normal and we will do them yearly to make sure all is right with my heart (if you are wondering, don’t worry, I have no heart issues, but this is why we are doing EKG’s: http://www.fightsma.org/blog/sma-science-research/bach-studies-autonomic-dysfunction-in-sma-patients.html ). My doctor also gave me my yearly flu shot. It is early, but the CDC said that the flu is starting early so I am taken care of already. I just hope this year’s flu shot is more effective than last years.
Classes are going okay. I have two tests this week, so I stayed home all weekend. My group for Sociology is becoming a pain (I think you can guess where). I am trying to work with them, but they meet alone and they tell me what to do, I am working on it. Frustrating to say the least. Rehab class is going good. So far it seems pretty straight forward and review. My group in rehab is going good. We work well together. I have a test in here Thursday, so will let you know how that goes. (My other test is in Sociology). My Counseling class is okay. We did move classrooms so we are a little more spread out and that is better. It is funny, after 2 hours of lecture, the professor shows a movie and we can stay if we want to or leave – I leave. The movie isn’t on the tests, so why bother! LOL! My online communication class is okay. The class is fine, but there are so many issues going on with getting it set up that it drives you crazy. I have my autobiography done, but now have to write the 4 pages that go with the 6 words. I’ll share next week.
Guess what, I finally got the phone call to go get fitted for my manual chair…three years later. My chair is in and almost ready. Whoo hooo! I had a three hour fitting Friday. It should be done this week, if the guy can make a tray this week. If, not it will be here soon enough. I loved the seat cushion, it felt like I was sitting on a cloud. Here are a few pictures - http://b4sma.shutterfly.com/5450
Unfortunately, I am not feeling great. Friday, I was really off and having trouble digesting food and was extremely congested. I am digesting food now, but am just feeling crappy. I have a sinus infection and who knows what else. I am knocking on wood, really hard now, but it almost feels like last January when I had the flu. I am so glad for my trach right now. It is blocking all the sinus crap from draining into my lungs – it just heads to my stomach. I have a dentist appointment tomorrow morning so it should be interesting. I have been resting and doing homework and working on websites.
Please say prayers for all my friends who are hospitalized, sick, or under the weather. (http://our-sma-angels.com/b4sma/prayers.htm ). This year’s cold and flu season is starting way too early this year. Don’t forget to get your flu shot and please, don=E 2t share your germs with others.
Love,
MJ
Quote of the week:
There is no medicine like hope, no incentive so great, and no tonics so powerful as expectation of something better tomorrow. -O. Swett Marden
Read Journal History
Hospital Information: at home!!!
email for number
Links: http://www.our-sma-angels.com/Margaret MJ's Website
http://www.smasupport.com SMA Support
http://www.our-sma-angels.com/b4sma B4SMA
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