life goes on!

 Being we are going to Boston in 19 days,  the cardiologist  didn't want to put Jake through more test that the doctors in Boston will surely repeated up there. He did do an EKG because Jake was having chest pain while we were there.  I'd love to say the test results were fine, or normal... but that's not the case.  Jake is an anomaly. The nurse said she was getting Jake's file ready to send in for a case study.  The doctor suggested we call Boston and let them know Jake is having chest pains and suggested that they do a Cardiac catheterization while we are up there. He said the chest pains will not kill him, but we don't want to ignore them either. He said the pain is probably from the lack of oxygen going to his heart.  He said it's best to have Jake rest so his muscles can relax, hopefully alleviating the pressure. 
     Hmm... let me get this straight.... Jake is an anomaly... well that isn't a surprise.  If you know Jake,  he has always been a bit different.... lol... He is such a fun kid. Even through all this crazy stuff, as we sat waiting to see the doctor, he was taking crazy photos with his sisters cellphone. Laughing at what her reaction will be when she discovers it... ( Jenn, you should check your pictures..we love you! and be nice to your brother...)
   Jake is still being really good about eating the right foods. I pack his lunch for him, bless his heart, because you know it isn't cool to bring your lunch in high school ! But you know what, he is surviving... life goes on... day by day.. we are surviving... living with this.... and don't get me wrong it still sucks... but today the suckiness isn't so bad.