Well, our big excitement for the week is that Papa comes home from Germany this Thursday, and we fly to Disney World next Monday for 5 days. We have never been to Disney, so the kids are really excited. We thought we would go before school gets out, but after all the State testing is done. We will go with Andrew’s Godfather, Mark, as he and Gretchen have a time-share in Orlando, and they are letting us use it. Also, we have a new Au Pair, Georgiana, who is the most wonderful, awesome, loving Nanny! Georgiana is great with John. She has been able to get him to take his medicine every morning before school, and this saves me from having to fight with him at the end of the day! Way to go Georgie…as the kids call her.

Yes, Carolyn is running the MCM 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

Ok, it is almost summer, so I think I need to update everyone on John! My last update was the day before his birthday in December, and we have made some amazing accomplishments in the last 5 months. John is almost finished with Kindergarten. He is reading Dr. Seuss books and lots of little small rhyming books he brings home. He is doing amazingly well, and weare really proud of him. He loves to read too! I think he really wanted to learn to read so he could be like big brother and sister. Andrew now loves to read almost as much as Vienna, so in essence John lost his play buddy to reading. Now John can sit along side Andrew and look at books and try to read them.

John had his 6 month check up at Children’s Hospital last month, and he did well in all areas. His braces had to be adjusted a little to accommodate his growing feet, and they were a little tight in the calves, but overall he is doing great. He has gained about 7 lbs, so he is now up to 41 lbs, and 104 cms (about 42 ½ inches). Still quite a bit smaller than his school pals, but that is ok. He maintained his strength regarding his physical therapy evaluation, and his speed was about the same too. He had a Cardio check up as well, and that was great....all things considered. He did have to wear the Cardio monitor for 24 hours, and he refused to go to school, so we let him stay home for a day.

John is doing really well with his swimming and loves the water. We try to go to the pool at least twice a week, and we just joined an outdoor pool for the summer. Speaking of summer, we are not moving to Germany this summer after all. I have been extended in my position with the Army, and we will join Scott over there at Christmas time. Scott is traveling quite a bit, so we do get to see Dad every few months anyway. This is great news for John because his social schedule is quite busy. He has lots of friends at school, and is always looking for a play date. The boy can play legos for hours on end, and he just loves to play and play. Every day he is asking for a friend to come over. In fact, we were at the library tonight, and he ran into his best buddy in school, Liam. They are so silly together that Mrs. Byvik, his teacher, told me that she will ask the Principal to NOT put them together in 1st grade! Yikes....they must really be two hams. I am glad he is having so much fun with his friends.

As for Duchenne Research and Finding a Cure….It seems there are quite a bit of trials starting, and there is always HOPE. We continue to hope that Dr. Eric Hoffman from Children’s National Medical Center will somehow come up with something. Right now, Dr. Hoffman is part of a world-wide team developing the technique called "exon-skipping." The injectable drug cocktail works like a band-aid, covering up the mutation that causes muscle weakness, allowing cells to make a healthier protein that improves muscle function. We are in fact having dinner with Dr. Hoffman on Saturday night, so maybe he will have some good news for us. Dr, Hoffman is working with AVI BioPharma, and they just announced that the Department of Defense Funding will allow the company to accelerate the development of AVI-4658 for Duchenne Muscular Dystrophy. Again, Dr, Hoffman stresses how expensive research is, but we are moving along nicely, and once he can prove a “proof of concept” than they will be able to really accelerate the trials to the boys! Here are a few links to some of the recent articles:

http://www.wect.com/global/story.asp?s=10362941

http://www.avibio.com/pr/pr416.php

As always, keep our boys in your prayers! We hope and pray for a cure.

Love, Carolyn