I am so glad the boys are taking Deflazacort now. Hopefully they will benefit. The conference is June 25-28 in Atlanta. It is so beneficial. I highly recommend that Amber, Rhett, or you attend. You get to meet other families, doctors, researchers and other experts and get so much good information. Check out the scrolling box on the right and click on the Connect box. That is was the conference is called. Let me know if there is anything else I can help you all with.
Sam is doing well with his biopsy site. It is 2 weeks today and he has healed well.
Hi Jean. I think Dr. Wong/Cincinnati Children's will take Medicaid. I think you could talk to Karen Long who will get you in touch with someone who helps with financial issues. Here is her email: Karen.Long@cchmc.org
Hi Jean. I saw you on Tanya's home page. I just wanted to let you know that i think its great your on here, although the parents wont get on. They may eventually, but at least this way your getting some info to pass along. If you ever have any questions, or want to talk, just send me a message. I'm not on here really often, but try to as much as I can.
Jean, I am glad you were able to meet John and Stefanie. My son Ben is now 16 and is happy playing video games with his friends in the other room. His doctors in Cincinnati asked how he was doing, and I was glad to report that he just bought a set of drums. If you have any questions please do not hesitate to contact me. Debbie Dupree
We've actually been members for 10 years when we got our sons diagnosis (now 13), but I haven't really visited the site message boards that much until recently. They've done such a great job updating it! It's kind of an isolating situation where ever we are, isn't it? Even though I am in a big city, you'd be surprised at how few people there are here with DMD. Our son is still very ambulatory at this point. We have him on a regimen of many supplements and daily steroids and the only side effect has been the height restriction. He's been on lots of things since he was 3 years old, including daily stretching so we are hopeful that we can keep him walking for a couple more years (at least to freshman year in high school). By the way, I guess I am under my husband's name here for some reason. I'm still new to this! Helen
I am glad that your family had a good Thanksgiving. The weather here was beautiful. Our family was thankful to be celebrating the day at all since my husband and I had been sick with a stomach bug for several days. We were finally able to get out of bed and eat real food. Even better was the fact that my mom cooked for us! We look forward to meeting you in December.
I am so thankful to hear from you. I have been looking on the website daily hoping that your son or daughter-in-law would join. I am so glad that you have joined and found me. I spoke with Kelly on the phone and she told me about Peyton and Noah. I know that it is tough for all of them right now. Getting a Duchenne diagnosis seems so hopeless when you are not given good information. It is even harder when you do not have good support outside of your family and cannot find good care. Do you think they would be interested in having some information mailed to them? PPMD has some wonderful materials that are very helpful. I can have them sent to you to pass on to them if it would be better.
After Sam's diagnosis I found that the more information I got about Duchenne, the stronger I felt. Education is empowering. It can also make a difference in how the boys are treated by other kids and even adults. People resond differently when they understand the facts. There are many things that can be done for Peyton and Noah right now. Stretching, diet changes if they are taking steroids, learning how to preserve their muscle function, and participating in safe activities like swimming can have a positive impact on them now and later.
I am so glad that you took the giant step for your family and joined this group. Hopefully the information and support you get from this community will be helpful. Please let me know if there is anything I can do to help your family. We would love to meet the boys if they come to Rockwall.
Joshua had back surgery because after a child get wheelchair bound about the age of 12 up they start gettting a curve in their back and it needs fixed. I recommend TSRH because that is all Joshuas Dr. Does 4 days a week every week every years he is an awesome Dr.
Clinic in Dallas I didn't really care for either, they are not very supportive.
I would like to encourage your Son and Daughter in law to join, because we are a family here, we totally understand the feelings associated with DMD. On this site, we can vent, yell, scream and even cry together. They didn't do anything wrong this (DMD) just happens. Give them a hug from me and tell them to take one day at a time, you cannot look 10 years into the future you will depress yourself even more.
Take care Jean and have a great weekend
I am not strong at all. God is the one that gives me my strength, without him I would crumble, But thank you anyway.