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Wednesday, May 30, 2012

Wednesday 5/30/12

Let's see...today was rainy and cold. Joey was supposed to go to his weekly horseback riding therapy session today but we decided to cancel because of the weather. I had to work 3:30 - 8:00 p.m. anyway so it would have been difficult for Shawn to get him there with all the kids. Hopefully he can make up the session Monday cause he won't be able to go next week cause his surgery is scheduled for June 6th. He had a good day otherwise, just into everything like usual! John was supposed to have a baseball game at 8:00 tonight but is was cancelled because of the weather also and rescheduled for tomorrow night. He worked all day, had practice and helped Emma put songs on her MP3 player. Tommie didn't have practice today but has a double header in Stromsburg tomorrow night which now means we will have to figure out if somebody can get to his games and John's. Always a thousand things going on in a day around here. John and Tommie both were mentioned in the Columbus Telegram today for their games last night so that is cool. Here are the links to the stories: John - Seniors' pitching shuts down Hastings Tommie - Junior Reds bounce back with big win The girls played with Cooper, played Wii, played Ipad, and rode bikes outside. They had macaroni and cheese for lunch and macaroni and cheese for supper. A favorite of theirs around here. It was spiraled shaped for supper so not exactly the same I guess. I'm all for a little variety you know. Easton is working on sitting up by himself. Getting close but keeps falling over if we let go. He will get there. Not in any hurry for him to grow up since he's the last baby. He gives the best hugs in the world. Totally knows how to get his way. One week from today and Joey will have his surgery. He is having a fundoplication repair from the first fundo he had 4 years ago and also the surgeon will repair a hernia he has developed in his stomach. He has been having severe reflux problems off and on again since December 2011 and the surgery is the only option we have left. I'm getting pretty nervous and pray everything goes well. Please keep him in your thoughts. I started this blog a few years ago and kept up with it pretty well for quite awhile. It's a great tool for raising awareness about CdLS and what the kids are up to. But unfortunately it has been neglected the last year or so. As the kids have gotten bigger, our schedules have gotten busier, and we also have our sweet little Easton. So now I've decided to keep a journal of sorts of our daily activities so we have something to look back on and keep track of everyone's milestones and family news. Hopefully I will stick to it because I'd love for us to have a way of remembering things that have happened. And hopefully tomorrow I can figure out how to keep my paragraphs separated. I know how to write paragraphs, I promise. One step at a time.

2 comments:

  1. Hi guys, I was hoping to build some awareness for a rare disease called Histiocytosis. For more information, please check out my blog http://myybeautifulnightmare.wordpress.com/ as I talk about my experience coping with this life changing #raredisease that left me in a wheelchair since 18

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