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to my journal!
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
This is my family!
There are 5 of us in my family.
There is Daddy, his name is John.
There is Mommy, her name is Kim.
There is my big sister, Lily.
There is me, Charlie.
And my little sister, Emma.
Do you want to see MORE of me and my family?
Visit us by clicking here!
We’re growing up a little bit every day!
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
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!
You’re Listening to: Spongebob Theme Song
Journal
Monday, October 13, 2008 2:39 PM CDT
Wow! Now I’m a whole month and a half behind on updating. I’m including an update I started way back on September 21…. But on to the update between then and now.
Emma had her nine month appointment a few weeks ago. We used to think she’d be our short daughter, but she is actually the same height Lily was at this age and believe it or not she is a few ounces lighter. I think that comes from how active she is – she is climbing, cruising and crawling everywhere. She eats a ton (but no more baby food for her) so she must burn it all off.
Lily and I went on her field trip to tag Monarch Butterflies. We were at the wetlands up in Lawrence (and may I say with all this rain, it was really wet). I had three girls in my group and they all were to catch at least one Monarch to take back to the tagging station. It’s actually pretty neat. All they do is record the sex of the butterfly and then they stick a sticker on the bottom of the wings that has a tracking number on it. Then the butterfly is released. It was a fun, wet adventure.
On October 1, Abby arrived from Dallas for a visit. She came up to walk in the Roefest Walk and Roll. It was nice to have her come early so we got to spend some time with her. She went with Charlie and me on his fieldtrip to the pumpkin patch. It was another fun day. Later that day, the first of John’s family started to arrive to stay the weekend for the walk as well. John’s parents, his sister and her family and his cousin and her son all came to walk with us this year. So we had 9 people in the house all weekend. It was very busy and a ton of fun. The walk went great. Charlie had so much fun buzzing around in Blue and leaving everyone behind. The rest of the weekend was spent playing and hanging out with the family. Most of the gang left on Sunday morning, but John’s parents stayed until Monday morning and Abby left Monday night. It was great to have everyone come visit, but it’s also nice to have the house back to our normal hectic selves LOL
Charlie went to school last Wednesday for the last time this winter. We were going to take him today and Wednesday but the school nurse said there is an up rise of upper respiratory bugs going around. We don’t want Charlie to be under the weather for his surgery a week from Thursday. We’ll head up a week from tomorrow to Madison. This time Lily will come too. She is off school next Thursday and Friday, so we’ll just have her skip a day and a half of school to make the trip with us.
John leaves tomorrow for Minnesota. He has an intensive study review class all week and won’t get home until Sunday. We’ll sure miss him (as well as the extra pair of hands around here all week).
Well that’s most of our update. You can read the one I started earlier below…. Please say some extra prayers for the SMA kiddos this year. Flu and RSV season has already hit so many of our friends. It’s going to be a scary year!!!
Sunday, September 21, 2008
Has it really been almost a month since I’ve updated? Why am I doing such a bad job these days. Could it be that Emma is so very busy? That I now go to Kindergarten three days a week? Or is it just that I’m in a rut and although I have the best intentions, I just don’t seem to get it done?
Lily’s birthday party was a lot of fun. She had 20ish kids to the roller rink for skating, pizza and cake. We all had a great time. Charlie didn’t want to drive Blue for some reason, so John or I pushed him around the rink. I actually appreciated pushing him because it helped me keep my balance – it’s been a lot of years since I’ve been roller skating! Lily had a great time and raised more than $550 for FSMA. She asked for donations in lieu of gifts this year and we are so very proud of the young lady she’s becoming.
Lily is enjoying second grade. She’s busy with soccer three times a week (practice, clinic and then games), piano, cheer class, Math Monkey and Brownies. It’s going to be a busy fall for her. Charlie’s enjoying Kindergarten and is making new friends. We had his bowling birthday party last Sunday with 25 five or six year old kids! It was crazy, but a ton of fun. Let’s just say that I’m glad I didn’t have the party at my house and that I didn’t have to clean up any of the mess :0) Charlie had a great time and I think all of the other kids did too.
Charlie had a playdate with one of the girls in his class the other day. Hannah is her name and Charlie thinks the world of her. There are actually so many nice kids in his class this year and they all seem to really like Charlie (of course, how could you not LOL). Charlie has had a few Miracle League Baseball games this fall. We go every Saturday until it gets too cold. He enjoys it, but he still would rather be home playing his computer or so he says.
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