Yes, Carolyn is running the 10K this year! She is crazy, but go ahead and support her for the 2009 Marine Corps Marathon
https://secure.piryx.com/donate/NFFx30Mo/duchennemd/carolynmorrison
Don't forget Tax free donations to support Team John John Boom this year!
Well, the summer went way too fast, and we are now hot and heavy into the new school year. John is in first grade, and it is hard to believe! We had a wonderful summer doing different activities from swim camps at the pool to an “Endangered Animals Camp” and as always a visit to California to see all the cousins.
Swimming has been hands-down the best exercise and therapy for John. Not only is he a very good swimmer, but it has been excellent for maintaining his flexibility. He loves the water and enjoys jumping off the diving boards, doing cannon balls and trying to dive as deep as he can.
We tried to keep him engaged somewhat with school work over the summer, so he is still able to read short books and he enjoys being read to. He loves math and even tried to answer Andrew’s multiplication questions when we are quizzing Andrew. It is funny, since he really does not understand the multiplication concept at all. He just thinks is it adding. So, when I say Andrew what is 5x5, John will answer 10. Well, at least he is trying.
John had a few visits to Children’s hospital over the summer. In addition to his annual cardiology appointment, he also had 2 visits to the Neurologist and the Physical Medicine Doctor. All with good reports, but sadly, nothing closer to a cure. There is a trail in London we are following closely, as once they can establish “proof of concept”, it may apply to most boys with Duchenne. To read more about the article here is the link:
http://www.medpagetoday.com/Neurology/GeneralNeurology/15710
John seems to be maintaining his strength, but he does tire easily, and we try to get him naps in when we can, and try to get him to go to bed by 8 pm every night. Giving him the prednisone as early in the morning is good too, as this gives him that “hyper-ness” that we want to counter as much as possible.
I have updated the photos, so take a look at those. Sadly, I am not running the marathon this year. With my job on active duty, a really busy summer with work, and a badly sprained ankle, I am only going to run the 10k. Vienna and I will run it together! So, be on the look out for us.
I want to give a special thanks to Wanda and Charlie Privot for providing John a brand new special bed for extra support for his back and muscles. I worked with Wanda on our new Army Casualty Assistance movie, and when she heard about John she told her husband Charlie. Charlie is in the bed business, and brought John the best bed on the market! Thank you so much.
Thanks for always keeping John in your prayers. I have so many people tell me all the time that they always pray for John. We thank you!
Love, Carolyn
Ps. If you live in the Washington DC area, Dining Away Duchenne is Sep 20th, tickets are available at
As always, keep our boys in your prayers! We hope and pray for a cure.
Love, Carolyn
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