Hi kim,
Just trying to connect with other families in ms. We live in rolling fork, and have a 3 yr old (Charlie with DMD) we are friends with the malones. would love to connect
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.
Melissa
I just came back from Houston. Grant has improved so much with his speech since April. At what age did Austin start steroids? Grant just turned 3. Hope all is well.
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.
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Just trying to connect with other families in ms. We live in rolling fork, and have a 3 yr old (Charlie with DMD) we are friends with the malones. would love to connect
Melissa
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.
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