Mary I know you understand what I'm going thru right now, I'm happy to know he is with the Lord and that I will see him one day standing and running free in heaven. But this separation has made me realized how great is God's love for us that he gave his son Jesus so we could live eternally in heaven I missed him so much but like he told me one day, God has a purpose in everything he does we just have to trust in him. My number is 813 569-5388 and I will love to talk to you whenever you can God Bless you and your family
My grandson, Nicholas Bullers, was diagnosed with DMD right about the time of Kenny's passing. I have followed your posts and looked at your Kenny's pictures over 1,000 times. What a handsome boy with a great smile. It looked like he was not only close to you and your husband but his beautiful sister Kelsy. I tried so many times to write on your site but I couldn't get anything out. I'm still not good with words, but I did want you to know I pray for you and your family often and I think about Kenny a lot. Thank you for continuing to support this community.
OMG....Where have you been???? I was getting ready to send out the dogs!!! Oh Mary so much is happening...changing: well Josh went to prom, he said it was great. His party was yesturday, for his bday, it went great. Graduation is this week. Mary, Josh is not going to edinboro after all... he is going about 3-4 hrs away for college!!!! I am so excited and so worried all at once. Everything is going so fast right now...Tanner turns 1 in about 10 days!!!! Alicia and Daniel are doing great, they are getting for summer!!! Ok enough on us again ...where have you been!!!!!!!!!!!!!!!!!! How is you daughter doing ? 814-756-0943 on way to run errands, home around evening
talk to you soon
I just wanted to let you know for some reason I was thinking of Kenny on my way to work this morning. His face was in my mind and about a minute later the song "Homesick" came on my radio. Kind of a moving trip to work, but I realized I hadn't said Hi to you in a while and this was the time. I pray you are all doing well.
hi mary thank you for your kind words, i know matthew is in a better place and i am glad that he is in no more pain but god do i miss him it will be six weeks on friday 3rd april. he missed his 18th birthday by three weeks his birthday was 16th march we left a bolloon off for matthew we thought it would have gone a long way we put a note on it with our phone number on it ,it only went about 6 or 7 miles a very nice man rang us to tell us he found it i would love to hear more about your Kenny its seems like he had loads of close friends ,matthew did not have any because he have maily been in bed for the last year and a half as he could not sit in his wheelchair it use to make him hurt so much thats all for now wil speak soon. will be thinking of you and your family today
You're right, the symptoms are so masked due to their inactivity. Not like you or I would experience. Which is why, as a nurse, never even expected to get the news we did in December. How wonderful of you to continue supporting others on this site.
Thank you for getting back to me. 11% ejection fraction, I can't imagine. Was it a gradual decline or did he have a sudden change as my son did? Sean has been on Lisinopril for some years now...prophylaxis, and CoEnzymeQ10, they just added the Coreg twice a day in January. The cardiologist was not going to do anything and I was not happy with that. They have not done an MRI just the echos and EKG's. Sean is a heavy boy and very difficult to move, needs hoyer for everything. He is having a lot of bloodwork today to see what kind of med we will put him on for probably Diabetes now. Thank you again Mary for the advice. What a handsome boy you had I see in your pictures.
Hi Mary, my son Sean is 15 and had such a drastic decline in his cardiac status over the past year, and I believe he is now a diabetic. It makes my hear heavy to read that you lost your son at such an early age. Could I be so bold to ask what took him so early.......was it early decline in cardiac status? This scares me beyond belief that I could lose my son within the next few years. Could you share with me any info that may be helpful to keep him as healthy as possible at this time. I am a nurse for 28 years now, but cardiology is not my specialty. Thank you