Michelle, thank you for your message and your interest in my clothing line. I will leave the link to my website below. I don't have online ordering available as of yet but if you see something you like feel free to contact me and we can work out a way to get a shirt to you.
I can't believe I typed a long comment a few minutes ago and then it disappeared! So here I go again! I live in Northern Jersey with my son Kevin (just turned 10 this past Wed.) and husband Gene. Kevin was diagnosed just before he turned 5. Miller looks very good and the group photo at the beach of him reminded me of my Kevin. He even has the same bathing suit! Kevin does pretty good at 10. Still walking around but uses a GoGo Ultra Scooter at home and school for long distances. He doesn't like long walks BUT will stay on the playground for a long time with his friends playing baseball and basketball. He played rec baseball this past spring and did pretty good -- just has one of his friends run to the bases for him. He's a happy kid, pretty funny, outgoing and has a nice big group of friends who really look out for him. It's just been a tough summer for me seeing his friends getting taller and able to get around so much better than him. I hate to see him struggle but he just goes with the flow. But lately he does make lots of comments wishing he did not have muscle problems, dreaming about them going away. He blurted out just the other day that his muscle problems have gotten worse since he does have a much harder time than a couple of years ago getting up off the floor or up from a chair. But he doesn't ponder it and moves on to sports or video games. It is me who is constantly worrying about the day his legs stop moving altogether. just can't picture him handling it well, not ever being able to get up. Have you had conversations with Miller about that? Would love to hear others experiences in that dept.
About 15 years ago I lived in the Virginia Beach/Chesapeake area. It was nice being close to the beach but I missed family and friends in NJ so I travelled back home again. I'm happy I did as I met my husband and just celebrated our 12th anniversary today and, of course, we had Kevin, our only child.
We just put a bid on a one-level home in our town (we live in a split-level) and hope to renovate it to make it totally accessible for Kevin for now and down the road. I see you are doing that and am sorry to see the word "nightmare" in the same sentence. We've done renovations on our present house prior to Kevin's diagnosis so I am familiar with the stress. Would be interested in your experiences and what type of renovations you are doing. Did you use an accessible architect and a contractor familiar with the same? Would love to hear from you.
Hope you hooked up with Tina in Maryland. She's a friend of mine and a great person. She is very knowledgeable and has a great family.
Mason complains about his height too but he makes jokes about it too. He has a very good sense of humor. Mason was doing really well with walking until September 2007 when he broke his ankle. After surgery we discovered that he actually has osteoporosis which is also a side effect from prednisone. He went through alot of physical therapy to get back the little walking he does do. But he is STILL walking! Does Miller take prednisone or Deflazacort? His Endocrinologist is concerned that he is not growing and is considering HGH if he does not grow soon.
Hi Michelle! No, Mason is just finishing up in middle school but will start high school in the fall. Believe it or not, I am not too worried. I mostly worry about the restroom issue. Because of budget restraints Mason does not have a para dedicated solely to him so he has to share a para with someone else. Is Miller still ambulatory? Mason walks at home but does not walk at school, its too dangerous with all the other kids. Some of those kids are huge and we worry he may get hurt. From reading all the other comments on your page are you still going to Cincinnati? Does Miller go to camp? If so, Where?
We got back a couple of weeks ago from Cincinnati. Dr. Wong didn't say much about knowing the severity based on where the deletion is, but she did say that Beau has low muscle tone (hypotonia), which we knew because is what caused our original concern which led to discovering that he had MD. She says that it is not proven, but in her experience she has seen that it can cause the disease to progress quicker (uuughh!), but that as of right now, Beau seems to be very average on the DMD spectrum for his age. Have you ever been told that your son has low muscle tone?
Just looking back over the comments from you back in October. I know we have talked earlier about our sons having the same deletion. I can't seem to get a straight answer as to whether it makes a difference in the progression of the disease where the deletion is. The neurologist that diagnosed Beau says it doesn't matter what number exon it is or even how many exons are deleted--that it doesn't make the disease more or less severe. We leave on the 26th of January for Cinc. to have our first appointment with Dr. Wong. I am wondering what she will say about it. I know that some doctors say that you can tell more about the progression of the disease based on the deletion. What have you been told?
We went to Childrens Hospital in RIchmond Va, when Dr. Leshner was there, that part was ok, but as far as getting financial help, it was the pits. There is a place in Richmond that will help you get a van with like a 3% interest rate. I recommend you go to the van house in Norfolk when you need any modifications done.
Hey Michelle. That is such great news that Miller is doing so well and still walking. What doctor do you take Miller to see? We are taking Beau to Cincinatti to see Dr. Wong in January. This will be the first doctor he will see since his diagnosis here in Birmingham.
So, is his deletion just number 54? How was he not diagnosed until he was 9? He must have been doing really well.
Beau is doing great. He is walking up stairs without assistance and running and climbing. He hit all his milestones as a baby on time until time to walk. He walked at 16 months ( not too late), but just didn't take off after that. He walked like a beginner for about 4 months. He never got up on his toes into that hurried walk like all babies do. We called early intervention when he was about 2 1/2. The pt thought he had slightly low muscle tone. We took him to a neurologist to find out if there was something causing the low muscle tone (just being alarmist) and discovered his CPK to be 20,000. We (and the neurologist) were shocked because he was doing so well at the time.
We are in the process of having him evaluated by the school system to see if he will qualify for any services. He seems to have a little bit of a cognitive delay...not much though. He is a great talker and loves to play, but sometimes I just wonder if he will have some slight learning disabilities. He doesn't respond to discipline like I think he should. Does Miller have any learning issues?
Hi Michelle. I'm Tina. Mark's mom. We're from Northern Maryland. We take our 7 year old to CNMC in DC. Where do you take Miller for his clinic appointments? I started a Md., DC, and Va. group a while back if you are interested in joining. Just click onto the group section. Take care.
Hi Michelle. My name is Jen, and I have a three year old with DMD. He was diagnosed in May. We live in St. Augustine, Florida. I love this site, as there are so many people with older boys with DMD that offer a wealth of knowledge for us "newbies!" I am glad your here.