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Our Life & Times
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The ONeill Boys Blog. Our Life and Times. Created on 15 April 2006 (#10038025). Last updated on 25 January 2014. The ONeill Family Web Site. Huntington, NY (1978 - 1981). Colchester, VT (1981 - 1985). I'm a mom, a wife and just plain old me. My two boys have spinal muscular atrophy, type 1, AKA Werdnig Hoffman disease. They have lots of physical limitations but they are very sociable and love to be a part of everything! Follow us on Facebook. Follow us on Twitter. 1999 LiveJournal, Inc.
The O'Neill Boys' Blog
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The ONeill Boys Blog. Our Life and Times. Nov 5th, 2010 at 10:46 AM. The stand is a lot nicer than Casey's as it has two swivels so that you can tweak positions easier. He was quite proud of himself! This morning we had Colin up in his stander at about 60 degrees, which is the highest he's been and tolerated! Ah, we got the boys' Dell laptop fixed on Thursday! Come to find out there was an extended warranty on the Nevidia (or how ever it's spelled/called) video card which is attached to the mother board&...
Egg salad, ants on a log and frost on the pumpkin - The O'Neill Boys' Blog
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The ONeill Boys Blog. Our Life and Times. Egg salad, ants on a log and frost on the pumpkin. Nov 7th, 2010 at 5:38 PM. It was very nice to have the extra hour of sleep back. We all felt a little off today but I'm sure we'll get used to it in time. Once again Casey was a perfect sleeper and Colin was a fusser. Moxie tolerated my getting up and down a hundred times and snuggled for most of the night. Nancy was here for the day. Casey had his tubby and had a trach change. Frost on the pumpkin.
The O'Neill Boys' Blog
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The ONeill Boys Blog. Our Life and Times. The "contractor" (I put that loosely) is here! Nov 6th, 2010 at 6:46 PM. We get a call this morning saying that our guy could come this morning. Yay! Of course Gene still has a lot of work to do on the inside like foaming and doing some sheet rock and then the trim. We'll see. I hope it doesn't take as long as the living room windows! The boys and I spent the day lounging around in the wish room watching movies. No fussing from either one! Prayers for SMA Kids.
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Behind a Shoelace & a Smile: Offering Advice
http://smileshoelace.blogspot.com/2014/09/offering-advice.html
Tuesday, September 16, 2014. An excerpt from a conversation on a Facebook SMA support group. For privacy purposes names have been altered.]. In case you're wondering what makes me qualified to be discussing this, I will give a brief history on my life experience because I do have some. I am 26 years old and have SMA. What type? Labels: quality of life. There was an error in this gadget. Enter your email address:. View my complete profile. Skylar's Journeys a boys battle with SMA. Life with the Ferrells.
Behind a Shoelace & a Smile: August 2014
http://smileshoelace.blogspot.com/2014_08_01_archive.html
Friday, August 1, 2014. Passion. I've been reading some extremely passionate posts as of late that are getting to me. Since I have been unable to think about much else than the hidden agenda behind the posts I am going say something. Subscribe to: Posts (Atom). There was an error in this gadget. Enter your email address:. View my complete profile. Skylar's Journeys a boys battle with SMA. Life with the Ferrells. Hope for Addy Grace*. Presley and Charlotte's Corner. Jojo and his Family: Life with SMA.
Behind a Shoelace & a Smile: March 2013
http://smileshoelace.blogspot.com/2013_03_01_archive.html
Monday, March 25, 2013. For days now I have been trying to think of a way to say what I want and not have it sound cliché or, worse yet, stupid. It is ridiculous how many people find a phrase and say it so much that it starts to lose the intended meaning. That is exactly what I don't want and, while it is flattering to be quoted, I didn't write this so don't. Quote me. There, now that that is out of the way, let's get to the point. I recently finished a book, Forever is Over by Calvin Wade. That basicall...
Behind a Shoelace & a Smile: PS I Love You
http://smileshoelace.blogspot.com/2013/03/ps-i-love-you.html
Saturday, March 9, 2013. PS I Love You. This post is a few days late or a few months early, depending on how you want to look at it. Either way it is important to me so please, read on.). Logan with his B4SMA Blanket. Needless to say I smiled for the first time in days and quickly responded with my own picture (which I can't seem to find, regretfully). In any case, I said yes and throughout the SMA Community we were considered engaged. Logan sealed it with a promise of a ring as soon as he saved ...After...
Behind a Shoelace & a Smile: April 2012
http://smileshoelace.blogspot.com/2012_04_01_archive.html
Saturday, April 28, 2012. What am I going to do? It’ll be just like old doctor was still here, right? Wrong, very, very wrong…. While the new physician is a kind person and listened to us, his lack of knowledge was concerning. Knowledge is power, right? Monday, April 16, 2012. Subscribe to: Posts (Atom). There was an error in this gadget. Enter your email address:. View my complete profile. Skylar's Journeys a boys battle with SMA. Life with the Ferrells. Hope for Addy Grace*. The O'Neill Boys' Blog.
Behind a Shoelace & a Smile: The Ugly Truth
http://smileshoelace.blogspot.com/2013/03/the-ugly-truth.html
Tuesday, March 5, 2013. In the winter of 2010, I wrote that I was privileged to have SMA. Now that privilege doesn't seem to ring as true for me. Shocking, right? Why did I have to be different? As the reader, you feel for 6 year old me, don't you? Now, what was the point of that story, right? Labels: privileged ugly truth. Subscribe to: Post Comments (Atom). There was an error in this gadget. Enter your email address:. View my complete profile. Skylar's Journeys a boys battle with SMA. PS I Love You.
Behind a Shoelace & a Smile: October 2012
http://smileshoelace.blogspot.com/2012_10_01_archive.html
Sunday, October 21, 2012. Subscribe to: Posts (Atom). There was an error in this gadget. Enter your email address:. View my complete profile. Skylar's Journeys a boys battle with SMA. Life with the Ferrells. Hope for Addy Grace*. Wishing for Elephants.Dylan Cuevas. Presley and Charlotte's Corner. The Suite Life of Lucy and Ethel. Jojo and his Family: Life with SMA. Kaitlyn Hatchard (Spinal Muscular Atrophy-Type 1). The O'Neill Boys' Blog. Picture Window template. Powered by Blogger.
Behind a Shoelace & a Smile: The Bridge
http://smileshoelace.blogspot.com/2014/10/the-bridge.html
Wednesday, October 8, 2014. If you know me at all, you know that I draw inspiration from everything. I read a lot, listen to different types of music (contrary to popular belief it is not just country), I love dialogue from movies and television, I have more than 2 thousand quotes pinned on Pinterest. Anything can be inspiration for me to create. Oftentimes I get an idea that won't let me be until I do something with it and this latest video is a good example of that. Help You Stand SMA Awareness. So I p...
~The O'Neill Boys~: March 2014
http://oneillboys.blogspot.com/2014_03_01_archive.html
Monday, March 31, 2014. Right now he's listening to Water For Elephants on his e-reader. Much of the time there's no one else in the bay. There are only 3 rooms. This afternoon a little kid came in for some treatment-I'm assuming some sort of cancer/chemo treatment. Breaking my heart with the wailing and crying. Sigh. This is a little stilted because I'm typing on the iPad. For some reason I couldn't get my laptop on line. Tuesday, March 18, 2014. Casey had an outing today. They went to the mall....AC ca...
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~The O'Neill Boys~
Sunday, December 3, 2017. Guess what Gene and I finally did? And we did it pretty smoothly. We've done it a couple of times ourselves since and we're getting into our groove. Pretty proud :). Christmas cards are finding their way to our mailbox, so thank you. But without Collie, it's too hard. I can't imagine doing all the above and not having Colin included in our picture. I just can't. Tuesday, November 21, 2017. I like to think that Colin was with us at this time. 💙💙💙💙. Friday, November 10, 2017.
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The O'Neill Boys' Blog
The ONeill Boys Blog. Our Life and Times. Jan 1st, 2011 at 5:03 PM. To continue reading about the adventures of the O'Neill Boys, please visit:. Http:/ oneillboys.blogspot.com/. I'll now be using Blogger instead of Live Journal. Make sure to bookmark our new page and visit often! One of my New Year's Resolutions is to blog about the boys more consistently than I have in 2009. Dec 12th, 2010 at 9:12 PM. We had a busy weekend and I'm pooped out! St Mike's Holiday Party. Dec 4th, 2010 at 8:00 PM. Santa reme...
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