Ryan had his first MDA clinic visit at Duke University Medical Center in Durham, North Carolina on Firday, October 3, 2008. We left St. Augustine at about 3:45 on Thursday afternoon. After a painfully long drive, we arrived at our hotel at about 1 am. The next day, Ryan saw the neurologist at about 8 am, the pulmonologist at 12:30 pm, and the cardiologist/geneticist at 2 pm. Over all, we left Duke at about 4:30 pm. An incredibly LONG day!!! All of Ryan's visits went very well. His lungs and heart are shwoing no signs of DMD yet (to be expected because he is only three!) And actually his asthma has improved since his visit in April of 2008. Ryan does not need to return to see the cardiologist until two years from now. We have scheduled his next visit with the neurologist and the pulmonologist on April 3, 2009 - where we will drive to Duke again and repeat this LONG day!!!

Views: 136


You need to be a member of PPMD Community to add comments!

Join PPMD Community

Comment by vicki george on October 10, 2008 at 10:31am
thank you so much i feel so lost, i dont understand alot of this , there is so much to soke in, i am sure you know what i mean. its nice to be able to talk about with other people, who know what is going on, i dont take chantz to the md clinic till oct.28th i am so scared, i took him to his first theropy class and she said that his is very bad and he is only 4 and showing md signs ofand 9 year old she told me that he will not be a lucky one that makes it to 20 years she dont think he will make to be a teenager, i was in shock to hear that he is my baby that is to much ad news in 2 weeks you know, she already put in an order for his wheelchair and i just cant belive that i feel so lost. i hope i am not talking to much on here i am not sure how this stuff works. thanks for being a friend i really need one
Comment by Jasmine Stringer on October 10, 2008 at 3:06am
Hi Jennifer
You just got the diagnosis. I like the pic of Ryan in his hospital gown. They manage to have fun even at the hospital. We found out last January about my son Skyler, it's been 9 months and it feels like I heard those words yesterday. I am still having difficulty accepting. Finding this site has been amazing. It feels so good to be able to share with you and all the wonderful families who are just like us. How did you even know there was anything wrong at 3 years old. I only noticed because my daycare provider thought Skyler was not keeping up with his friends. I just thought he was fine and would catch up, he was just little. I guess we found out when he was 4 cause he just turned 5 in May. If you have time to share, i would love to hear.

Need help using this community site? Visit Ning's Help Page.



© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service