Thanks for your words of advice Kelsey:) They are 5 years apart and right now all they do is fight constantly. It used to be Jacob going after him all the time but now it's 50 - 50 as to who initiates them. They say things to each other in the heat of their fights like "i wish you weren't here" and it breaks my heart to think that someday they may want to take those words back or blame themselves for what is happening.
I look at the pictures of you and Kenny and I can see how close you were and are and it really makes me feel good to see a relationship like that.
I look at Kenny and think what a handsome looking boy!
Do you mind me asking if Kenny had the spinal surgery? You see Jacobs deletions are 42 and 43 and he needs exon 44 skipped so I'm fearing that his heart will be affected first like Kennys so I was wondering what he had gone thru before he passed away.
If this brings up too many bad memories just call me a jerk and I will understand.
Thank you so much for those touching words. When i was young i did not understand what this disease was. I was like ok he is still my brother and i was going to treat him just as that. I did spend a lot of time with him and i still wish i had more. The one thing i can say is time is precious and love him up as much as you can. His sister will soon understand and will want to be with him every minute. Thanks again
Riley has not been to Cinci yet but we are waiting to hear from them. We are also waiting for the DNA results. He is 5 years old and was diagnosed on January 24, 2008. I watched him climb steps yesterday and he mastered the first 2 by holding the handrail. He climbed the remaining 12 bent on hands and feet. My daughter said she doesn't know if it is a sign of MD progressing or if he developed this adaptation to make it easier to climb. I can't wait to hear from CHOP nor can I wait to find out DNA results. My youngest daughter had a son 4 months ago and of course, I worry if he may have MD as well.
You have beautiful grandchildren! When was Jacob diagnosed? Does he go to Cinci? Is he on any treatments? I want to learn as much as possible about DMD so expect lots of questions from me! Thanks for replying to me in the grandparents group.
Thanks for introducing yourself to me and sharing photos of your grandson. He is almost the same age as my nephew, Calvin. Calvin has a sister and a brother who are almost 7.Calvin's mom will be attending the conference in Phila in July. I hope to walk/run the 3mi with my son early Fri. Look forward to chatting with you again.