Awww.. I know, Christian's counselor started crying when he said goodbye, which got me crying with got Christian crying. I know for Christian, this time was a little different because he actually made friends and wants to be around them. Years past, friendships weren't as important to him. Stride and Ride ( although I've never done this) is held at the Memphis Zoo. I think you get sponsers and people to donate some money to the MDA and in turn you walk around the park . Supposably it's a camp reuinon as well..should be fun! I have no team, not sure who I can get, but plan on being there.
Dah! What was I thiking! Ok, one more time! I was excited to see you all at camp this past week, Austin looks great! Hope he had a great time! We plan on attending Stride and Ride in October..hope you all can make it! I haven't actually done this yet, but think Christian will want to see his friends again..anyway, Look me up on FB if you are on there!Kristi
Pat's amazing. Long story short, Pat found us after our friend Carrie posted our story on her blog. So Pat and I had been emailing back and forth for a couple months, then she asked if we wanted to meet when she was in Seattle a few months ago. So we jumped at the chance. About 10 minutes (no kidding) after our meeting I got an email from CCHMC about setting up appointments. I'm so glad to hear that Austin is doing well. Talk to you soon.
Austin looks great. How is he doing? I am always shocked when I meet DMD families and they have other boys and only 1 of them has DMD. (Which is amazing and wonderful). Just shows you that genes are a weird thing. It's nice to meet you and good luck again in Cincinnati. It sounds like you have been there before. We were so impressed with Dr. Wong and all of the other doctors we met. Other moms told me the Cincinnati was the right place and they weren't kidding. Take care.
Thank you so much. I already sent the information to my son. I am a teacher and today was our last day and will fly to Texas tomorrow to be with Grant and his brother Dresden. As a grandmother I want to do all I can to be a support for the family. My son and daughter in law are going to the conference in Atlanta. Harriet
Kim, My grandson, Grant, was recently diagnosed with dmd. with the duplication. I know it is rare . Any advice or information you can give us/ Grant will be 3 this week. Your children are beautiful. Harriet
Gril, glad to hear you visit went well!! Always a good thing :) How far is the drive??
Our trip went good too. You should check out my blog, powellmishaps.blogspot.com I have some pictues of Dr. Burnett and of the visit. I really feel we are in good hands, and get this...he is going to the PPMD conference this next year! I love it, he is all about wanting to get up on the latest! So, really I just feel real good about our care. Now our next appointment is in April and we will have a cardio exam as well, so this may prove different. The last time we had this, it did show some abnormalities, but still within the "normal" range for DMD at his age...so, I hope that it stays the same and not worse...
But really, I have this "funny as all get out" blog going. Check it out, you may get a good laugh. Oh, also, I took a picture of a 20 degree angel wedge that he brought out to show me so that I could have one made. I have seen it before on this website, but it was kinda cool that he brought this out for us to see and give it a try. Also, I did talk to him a little about future plans with Vandy, he said that he would like to have it set up like Cincy, but that takes some time, however both he and Dr. Markham are really working to gether as a team. ( he is the cardiologist from Cincy). Anyway, I have no complaints about it there.
No, we don't see all the Dr's at once when we go there. But, they are trying to get this started, it was mentioned to me at our last appointment. This may take awhile to arrange this, I will ask for more details on this next visit. But with that being said, you can have your other appointments done on the same day...like we had a cardio visit the same afternoon, they were able to coordinate this. Just not located in the same area.. Both the Cardiologist and Dr Burnett are close friends and do confere with eachother.
We are kinda new at this, my son was diagnosed 3 years ago. When we first started at Vandy, we saw Dr. Sharpe. I was not as impressed intially because I had heard of all the " baselines" that you should have done immediately and this dr wasn't rushing into any of that. But looking back, we were caught off guard, and he was easing his way into all the tests etc. So, the next visit, we had more tests ie, caridologist exam and bone density and some DNA testing. We have a carido exam every year, no meds perscribed at this point as things appear to be on the normal side of DMD.
Each vist, he measures Christian's strength with a tool that he has to push and pull to get a reading from. ( hope that makes sense). He has him do things like see how he runs down the hall, walks, listens to his heart lungs, blow on the machine, asks us lots of questions about his strength etc. They are good to take all vitals when you first get there and have a shee that you can write your questions down and it will be addressed in your meeting with him. i have never personally felt rushed or that my questions were stupid etc. We have talked to him a little about the research that is going on, he appears to be knowelegable about it. We tried to get a loaner wheelchair two visits prior to our first meeting with him and we had no luck. When we met wit him, told him of our problems, we had a wheelchair by two weeks, so he was quick to get something done.
Please check with the other's to make sure their experiences were just as good. I would not want you to go and have other's say it was a terriable experience..( which I don't think that's the case,). If you want to talk about it further email me on my personal email: firstname.lastname@example.org and I will be glad to give you my phone number. But I will for sure let you know how our next appointment goes.
Hey Kim :) That is quite a drive to Cincy.. we had toyed with the idea when we first got the diagnoses, but see no reason to at this point in time. Vandy is a great hospital. We see Dr. Burnett who is relatively new and comes from Johns Hopkins. We have only seen him twice, and have been impressed both times. He's a bit " nerdy" if you will, but I feel good about the care we have received even prior to him being there. As you may have heard, Vandy has Cincy's best cardiologist. Dr. Larry Markham. We actually met with him at our last appointment. He told me that both he and Dr. Burnett are old friends and want to get Vandy's MDA clinic set up like Cincy. So, I imagine there might be some changes in the future. But honestly I feel good about the level of care there. I hope this is helpful and if you have any further questions, please don't hesitate to ask. We have another appointment coming up next month, so I will let you know if anything changes.
Kim, I think I talked to one other mom on the old PPMD message board who's son also has this duplication but other than her son & yours, that is all that I know about. Duplications are so rare - I think they told us only like 8-10% of DMD have duplications anyway, so odds of many boys having the same ones have got to be rare! Tina
Hi Kim! I hope all of you are doing well and enjoying the summer. We are so thankful that school is out and can have some more relaxed days. Right now, still in the middle of construction from the April tornado, but hopefully all will be complete next week-end. Please let us know if you are ever down this way. How is Austin doing?