Hi Jennifer! It was so great to meet you and your precious Will last week! I'm so glad we got to talk albeit briefly. I would love to keep in touch. I also wanted to let you know that I think we are having a get together on Sunday, December 13th at our house with the families that I told you about. I know it's a little far for you, but we'd love for you to come if are up for the drive. You are welcome to stay Saturday night with us if you wanted. Hope you had a safe trip home and that your week gets off to a great start! :-)
We just got back from seeing Dr. Wong late last night (Thursday night) - I'm shocked I didn't see you there! This is the first time that I have seen so many boys with DMD in all our visits (we've been seeing her for about 3 years, I think).
Anyways, we live in Atlanta. Blake is my oldest (he will be 13 next month) with DMD. We have 3 younger (Jackson 9, Lauren 6 and Ansley 4) who are all healthy).
Was that your first visit? My best friend from High School lives in Florence, KY (just over the bridge) so we stay with or near her family.
Hi Jennifer, we just got back from a week long trip to Cincinnati last week too. I wonder if we passed each other in the Neurology department. We had appointments on 2/24, 2/25 and 2/26 and I think I may have seen your little guy in the waiting room. I'm glad to hear that you had such a wonderful experience at CCHMC. The entire staff is amazing. :)
Hello Jennifer and Billy. This is the first place we have been able to connect with anybody else, Ga or otherwise, who is in a similar situation. Brandon is 8, and technically still being diagnosed. Dr Sladky is pretty certain its DMD, but the first DNA test didnt show anything. We are waiting for results from round 2. Its scary to be torn between praying its not DMD, and what else could be wrong with my son.