Dee, I found you! I am looking for boys 8-12.I can/will keep you posted as to my progress in finding participants. I just may be able to use this site to communicate with others that care about DMD. Thanks for your response. Donna
Hee hee! I am not sure I'm supposed to be signed up....a few families asked me to see a blog thingy. I couldn't without being a member. I am technology challenged, so I bet my time will be limited at this :)
Hi Dee! We live in Litchfield, which is about an hour south of Springfield. Cole is seven and we also have a younger son Chase who is three. Cole is doing really well right now, and of course gearing up for Christmas! You're right about PPMD being a blessing, I know I would feel pretty lost without all the knowledge I've gained from them. I hope Brady is doing well and looking forward to the holidays! It was great hearing from you! Take care and Happy Holidays!!
Yes, we do doctor with Dr. Mathews. Our first few appts were in Iowa City, but from now we are being scheduled with her Des Moines outreach clinic. It is much closer for us than Iowa City. We went there for the first time this summer. Her staff travels with her so we get the same level of service if we had driven further to Iowa City. Nick was diagnosed in January. What an overwhelming blow as you know. We are learning as we go along. Christina has been very helpful answering questions via email whenever we need something. Nick has deletions 48-52. The information is way too much in the beginning. I have purposely avoided websites until recently. Too much of a glimpse into the future is not something I am ready for. Nick started deflazacort in February. He wears his AFO's about every other night, stretches, etc. Multi-vitamin as well. I am going to ask Dr. Mathews about what else we could be doing. Some parents have their kids on this congotion of stuff and I am not sure if that is right for us. Also, have you heard about parents putting their children on Lorastin to slow down the progression? (I think is how it is spelled). There are so many variations out there how do you know what to do?
I was too busy keeping my eye on Dax at the reuion, that I didn't get a chance to visit much. So who are your parents? I am sure they talked to Scott's mom Janice. (She had Ally most of the time.) I will need to ask her about it the next time I see her.
We hope you write back! It will be nice to hear from you and find out our family connection.
Welcome to the PPMD community. I hope you find it both helpful and inspiring. My husband was born and raised in IL. I'm not sure how it is spelled but it was Bowlingbook, IL. I am from California and he moved out here when he was 14. Talk to you soon.