I am just now reading some the events that have happened on here this week and it breaks my heart.  I have had bad news this past week myself. My 7 year old is having heart problems along with the dmd. Last tuesday we were rushed to cardiology for an emergency ekg. They discovered he has LVH. Which they said should have corrected itself when he was four but it didnt so we are back to the doctor again tommorrow. Its crazy how we never know what tommorrow holds when it comes to our sons. They are our worlds and no mom should have to live being afraid of what will happen next. Or thinking will i have to bury my son next week and the worst part is we just dont know and it scares me to death.

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Well we hadnt long got back from the cardiologist. They had a little bit of good news for us.  They said that the echo looked fine.  But hes complaining with chest pain so they said if his pulse goes up again he has to go to ER.  There is nothing they can do about the LVH yet since the spells come and go.  But the next thing before meds is a heart monitor. They just didnt want to do that today.

dear danielle  i am so sorry how is your son doing today. kimmy

Kimmy my son is doing good now. These spells come and go so i never know from one day to the next but thanks for your concern.

 you are very welcome, i to have phycall challenge  and mental ones to, but that does not stop me form  slowing down. plain to  meet one direction. what do you to deal with your stress. kimmy

Pretty much i dont deal with my stress i just take this all one day at the time. My niece would be so jealous that you are meeting one direction she loves them.  I like their song little things it is how i feel most days. Do you mind me asking what kind of challenges you have.

 my life is open book  the muscle in my body are pop out of the socket,  so that was  14 operation   and  delexty , sever anixty and father who just did not think i was special . the major thing is that make t ime for me, go to the ymca five days week spent over fours and work to the bone which  help me to loose 30 pounds or more plus  more than12 half percent body fat. have done  four half marathon runs for our son rase tons of money.  some time use walker and  chair  because legs get tired.

I am sorry to hear that. Everyone is very special and you should know that. It is important to take time for yourself but all my time goes into my son and husband. i try to stay busy so that i dont have to think about all the things he is going through.  But i feel guilty because there is nothing i can do for him and i said i would always protect him.

i do know  now, what did for me was meeting wonderful people, at the ymca  and meeting mindy who son is has duchenne . who is my role model and inspire me every day to work hard to be better person. just remember what a wonderful mom you are wife do not sell yourself short  , or let any one else. at first i felt guilty about  having survive   was for   a reason. kimmy may i add  you as  friend for my web page.  am online  parent project a lot. kimmy

danielle i do mean to bother you i just want to check to see how  you are.kimmy

Its no bother im glad to know someone out there cares. I am doing good today how about yourself? And yes you can add me as a friend.

Danielle I am so sorry you and your son are dealing with this. But I totally understand how you feel. Lately I've had to re-evaluate some of my priorites and relationships. My 16 year old has a seizure disorder and my 4 year old has DMD. I go to bed every night wondering if "tonight is the night?" Will wyatt have heart or respiratory problems tomorrow will Anthony have a seizure. Its a really tough way to live. Best of luck with your son in the next couple of days. God Bless!

thank you. Best of luck to you as well our sons have to be our heart and souls or we will never forgive ourselves for not trying hard enough

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