Hi Tracey, well, still as a relative "newbie" to all this, welcome to PPMD. Kyle was diagnosed unofficially in April 2008; officially through DNA in June, 2008. It looks like you are probably a few months in to this already, so I hope the time has helped with the adjustment. Your family is beatiful - I love your son's smile. That is what helps so much on some days - you get that smile just out of the blue. He smiles from ear to ear, just like my Kyle. It does get better, but you will have days to where it feels like you just found out; a song on the radio, older kids playing and you wonder, you let your mind go to the future - but that's okay too, because I think we need those times as well - I really think it makes us stronger. We are in Illinois - as close to Iowa and Wisconsin as you can get - East Dubuque, IL - ever heard of us??? close to Galena, IL (big touristy spot), and Dubuque, IA. About an hour and 1/2 from Madison, WI. We doctor at the University of Iowa with Dr. Matthews - who I have so much respect for. They doctor the "whole" child, not just DMD - which we have found to be very positive. I saw your reply on the pe issue. I'm not sure what your son's symptoms are or how "mild" his condition is, but we've had discussions with our school district (I'm also on the school board) and the pe teacher has the education information from PPMD. Basically, they know that he should not do any "strengthening" type activities and that stretching activies are good. I think it's tough for pe teachers - it's a hard subject to grasp. Again, we are working with the "whole" child concept and we want Kyle to be a little boy. He knows his body, and he slows down if he needs to, which isn't very often. He's very active which is in his favor. Anyway, welcome to the community - think positive!!! Donna
Hi Tracey, So sorry for what your family is going through. It is sooo hard. My son is now 14. He was diagnosed at 6. He is still walking and is a very nice, funny and cute guy who loves video games, nerf guns, movies etc. We have tried very hard to not make his disability a big part of him and who he is. It is something he has. It does get easier as you get used to living with it, but it is not what you (or I) had planned for our sons.
Good things are on the horizon . Never lose hope. Rosy
Hi Tracey- We live in Fort Wayne and my 7 yr old was just dx on 6/29 this year. We just got back from Cincinnati from our 1st appt with Dr. Wong. Jonathon will be going into 2nd grade in 2 wks. Would love to connect with you.
This is Danielle Garrigan from PPMD. I work with Ryan. I hope all is going well! Could you send us via email your address so that I can send you a Parent Pack? You can email me at firstname.lastname@example.org or Ryan with it. Thanks! Have a great week!
I'm in Michigan as well. I also sent you a friend request with my number if you want to talk or have any questions. We are 3 1/2 years into this now. My son Daniel is 8 1/2. I remember how hard it was at first and the questions I had were so many. Hang in there, it does get easier, I know the shock is so hard those first months. I remember it like it was yesterday. You will find so much support here and answers to many of your questions.
Tracey, we moved to MN 6 years ago. We started Xavier in PT when he was 3 because he couldn't jump. It was his PT that was the one that saw the DMD in him because the place he goes has 5 other boys with DMD they treat. I often wonder if we were still in Michigan if we would have found the diagnosis so early. The neurologist doubted that he had anything wrong with him, he just ran a CPK on a lark. It shocked him to no end when it came back at 25,000. We have no family history, but I have to say I find it so amazing the amount of Michigan families with DMD. It seems to me there is a higher amount of MI families affected (I could be wrong on that) than other populations in the US.
Regardless...I am so sorry that you had to find your way here, but you have found the best place to deal with this. These early months are so hard. Know that this really is a grieving time and process and allow yourself to treat it as such. You and your husband will be in different places as different times. You will deal with it very differently. It's ok to be angry, it's ok to cry, just know the time and the place. Your son doesn't know life has changed for him, so it shouldn't. If you want someone to talk with I can certainly share my phone number with you or feel free to email me anytime. email@example.com If your husband needs to talk "man" with someone, my husband is always willing to talk. His name is Frank and his email is firstname.lastname@example.org Hang in there, take it minute by minute when you need to, day by day otherwise. I'm 3 years into the diagnosis....it does get easier, you do see the blessings in this, I promise.
Welcome to the site. I live in MN now, but I grew up in Grandville MI and worked in Zeeland for a while. I miss the area so much. My son is 7.5 and just finished his first trip to camp this year. Please let us know what we can do to help you. There is a huge Michigan community of parents. Be sure to find the group and join. They will certainly help you navigate your way around.