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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
Saturday, October 11, 2008 9:09 PM CDT Hi everyone:
Another update about me and another week has gone by. Time is flying by but with sad news this week. There are currently almost 30 kids on my prayer page (http://our-sma-angels.com/b4sma/prayers.htm ). One SMA kid passed away and 2 family friends also passed away. All three will be missed and will never be forgotten.
On my front, things have been better, but things could be worse. I went to see Dr. C, my GI, for my 3 month follow-up on my reflux and IBS. For the past two weeks, my IBS and reflux have been pretty miserable. Dr. C had some ideas how to help and the first plan was to start me on an antibiotic, Xifaxan, to help kill all the bacteria in GI tract and then to reintroduce lots of probiotics back in to keep good bacteria in my gut to help stop the IBS. The worst part of that idea what that I had to quit eating orally. NPO, nothing by mouth for two whole weeks. I currently can still eat orally at times and still drink liquids, but never a lot, but going 2 weeks seemed like true torture. The Xifaxan liquid is a bright orange and when we saw it, Brenda exclaimed, “It’s the Great Pumpkin, Charlie Brown!” It really was a strange color. Anyway, I started Thursday morning with the meds and with the nothing by mouth. Normally I have a drink of something in the morning which helps my throat to stop from closing (how, who knows why) but could not have anything at all. About 20 minutes after my meds, I began to reflux. Normally, my reflux is under control, but the past two weeks has had me refluxing multiple times a day but nothing coming up into my throat. Well, the Xifaxan instantly started causing more reflux but major heartburn with it…not good. As the day progressed, I started refluxing higher and higher up…into my mouth, gross, I tell you, just gross. Well, Brenda called the doctor about giving me liquids, which he okayed at 4pm because my blood sugar kept dropping. By the time class got out at 6:30pm, Brenda had about had it (as had I). I was having muscle twitches, due to the lack of sodium and potassium in my diet, was refluxing almost 30 to 60 times an hour, and was just plain miserable. We headed home and as I laid down, I had a big reflux episode, and up and out came the meds, still…it was that bright orange pumpkin color. Unfortunately, some of it went into my lungs and we suctioned some out. My sats and heart rate sure showed it so Brenda called the GI office and said we stopped the antibiotic and let me eat orally, to get my electrolytes back in line and asked what to do next. They never called back, so I personally took that as a sign to eat and enjoy my weekend.
Thursday I did get my two tests back from the previous week. I got an A in Sociology and an A in Medical Aspects of Rehab. I was very happy about that. The Rehab class was pretty easy and missed a few questions, but was one of the top scorers. Yippee! My Sociology group is working a little better after I sent a rude/sarcastic note to the boys about how we were going to split up the work and do it MY WAY! LOL! My Rehab group is wonderful. I like my group and we work well together.
Friday, my cousin Kate and her mom, Aunt Maryanne came up for dinner. We went to Max and Erma’s for dinner, since neither of them had heard of it before. We had a good time catching up on everyone’s lives and just hanging out and having fun. If you go here, you can see pictures of our fun times (not many pictures, but lots of fun!). http://b4sma.shutterfly.com/5483
Sorry it is late in coming, but I had to finish my 6 to 8 page pager based on a 3min and 50 second clip of a movie…the movie clip was too short, so I rented the movie to help. It is done and turned in on time (due at 11pm). Now onto next week’s work; a test on Tuesday in Counseling and a 4 page paper due next Saturday. I will wait till tomorrow to start that, as it is time to do another breathing treatment.
Hugs and prayers to all that are under the weather. It is way too early to have this many kids sick and in the hospital already.
Love, MJ
Quote of the week:
In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. ~Albert Schweitzer
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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