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Welcome
to my journal!

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My name is Charlie! I hope this helps to keep you up to date on all that's going on in my families life since I was diagnosed with Spinal Muscular Atrophy last May. Please sign my guest book and come back often. Love, Charlie

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This is my family!
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There are 5 of us in my family.
There is Daddy, his name is John.
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There is Mommy, her name is Kim.
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There is my big sister, Lily.
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There is me, Charlie.
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And my little sister, Emma.
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Do you want to see MORE of me and my family?
Visit us by clicking here!


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We’re growing up a little bit every day!





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This digital quilt was made especially for me by the Quilt of Love people! I think they did a great job! Check it out!
Charlie's Quilt of Love

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When I was little, I got a blanket from an organization called B4SMA. Now that I am a big boy, my mommy makes blankets for B4SMA so other kids with SMA can get blankets! If you want to check it out and see all the other kids who have gotten blankets or learn how YOU can help click on the button below!


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You’re Listening to: Spongebob Theme Song
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Journal

Tuesday, January 13, 2009 8:51 PM CST

We’ve had a pretty mellow week. And surprise surprise I’m actually updating with less than a month in between! The kids are back in school after their break and we are getting settled into our routines again. We are waiting to meet Charlie’s new homebound teacher and hope that we can get started with our weekly visits again soon. Charlie’s kindergarten teacher was coming to our house, but she had her baby boy a little early. Congratulations Mrs. Jones! So now we are waiting to meet his substitute teacher. He is back in the swing with his PT, OT and ST and is doing well. Charlie misses his school friends though and we are working/pushing to get him on a web/TV school so that he’d be linked with his class. Wish us luck!

Lily is doing great and staying busy. She’s really enjoying the activities that she does. She is our piano queen and we love listening to the songs she composes with her piano teacher. She had her first basketball game last weekend and John said she played so well. I wish we were all able to go to watch.

Emma is our busy girl. She is such a joy and we can’t believe how lucky we are to have her in our lives. Time is flying and I’m already missing the little baby she used to be.

We took the two older kids to see Bolt last weekend. That was our big outing for the week. With the cold/RSV/Flu season upon us, we’ve been avoiding places with crowds if we can. We have so many SMA friends who are sick so please if you have spare prayers, send some up for them. (MJ, Sophia, Kaitlyn and Kyle just to name a few). If you haven’t already, please check out www.petitionToCureSMA.com and sign it! Praying for big advances in 2009!

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