Like always, it's been awhile since I've updated. We've had a busy summer and I can't believe Carter's already been back in school for 3 weeks!! He had his first sick day today, was sent home with a backache and fever of 103. I think this is the longest we've gone into the school year before he's gotten sick! He tends to catch something the first week. lol. Just something we're used to with him.. His fever broke this evening and has yet to reappear. I'm staying positive that it's just a minor bug and he'll be back to school on Thursday. Please keep him in your thoughts.
We had a great summer. Hosted our first fundraiser, Climb to CureDuchenne Pick Your Peak 2011 on July 3rd at Mt. Rubidoux and raised $2367 for CureDuchenne. www.tinyurl.com/teamaltura So thankful for all of our family and friends who helped out and supported us! The next weekend we were in Baltimore for our first Parent Project Muscular Dystrophy connect conference and it was just amazing to connect with so many other Duchenne families. Carter absoultely LOVED meeting up with all his friends and asks constantly about them. We will do all we can to attend every summer; it's great to be able to connect online and on Facebook, etc.. but nothing like being face to face and feeling so NORMAL and at home. <3 our Duchenne FAMILY.
I also recieved my first shipment of SAVING OUR SONS ONE STORY AT A TIME. Still have many copies to sell, proceeds will go towards paying off Carter's new scooter as well as next years appointments at Cincinnati Childrens Hospital and hopefully towards getting to PPMD again next summer. Please see posts below or email me at: cure4carterblaze@gmail.com for more info on getting your copy. I also have Carter's Climber's shirts still available from our fundraiser. Stay tuned for t-shirt/signed book packages! =)
Carter is now in 2nd grade, and it's a little bittersweet. He still has so much strength and is doing very well compared to other boys his age with Duchenne. But, he also has a lot of pain and isn't able to keep up around campus/on the playground at school so he started bringing his scooter for use outside this year. It has helped a lot but he still gets home very tired some days. We are trying to find a balance of letting him run and play as much as he wants while he can but also not letting him overdo it. Hard with a very active 7 year old who is determined to be just like his friends. Since his arms also get fatigued, he will be typing in the classroom and at home instead of writing most assignments. Before bringing his scooter, all of the 2nd graders got a little bit of information on Duchenne (Care of this great video http://www.youtube.com/watch?v=6wLnR7GJakY) and it's seemed to helped with the response he's gotten from the other kids. He's said that they've been helpful and haven't teased him, which is something he was very worried about.
There is LOTS more to talk about, but it's 1am and my bed is calling my name. =) I will write again soon.
<3
Wednesday, August 31, 2011
Tuesday, July 26, 2011
SAVING OUR SONS One Story at a Time
I recieved my first copies of SAVING OUR SONS ONE STORY AT A TIME this weekend. Thank you so much to Misty Vanderweele for putting this book together!! It's surreal to see my story, Carter's Story, in print and I'm truly honored to be involved. Each personal story in the book brought me to tears. It's amazing how similar the heart of our stories are. All of our lives have been turned upside down by Duchenne. A disease that most of us had never heard of prior to our son's heartbreaking diagnosis. None of us planned on this life, but we are all striving to make the best of it. We are determined to give our sons a future.
Please, if you haven't already, order the book!! (http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze or email me) It's inspiring and a real eye opener into what day to day life is like for our families affected by Duchenne. Proceeds from books I sell will go towards Carter's expenses not covered by insurance. Please email me at: cure4carterblaze@gmail.com with any questions.
Monday, July 18, 2011
Thank You (from Carter)
Please see Carter's post below for pictures and information on our fundraiser we held in July. He wrote this all on his own, so proud of him. He continues to ask me how we can raise more money to CURE Duchenne and has a lot of ideas. Carter is amazingly strong and I know he will do big things to make a difference for himself and others with Duchenne.
http://carter1b.blogspot.com/2011/07/thank-you.html
http://carter1b.blogspot.com/2011/07/thank-you.html
Subscribe to:
Posts (Atom)
