Seth is currently one very active, very bright and very happy boy! I'll private message you my contact details if you want.
it will be a tough journey. it is a tough blow and just when you think you have your mind wrapped around it you will be knocked down again, but there will still be many many many great and wonderful moments as well. my son is 7 years old and was diagnosed around 2 years old. i still feel like I am always waiting for something- most of all the cure, the test results, the phone calls, supplement, phone call from the insurance guy, meds to arrive, more time- haha- there really are only 24 hours a day. I must say I am mostly comfortable with all the waiting- it gives me more time to spend with my son and more time to watch him walk (yes- i am well aware that walking will not always be in his future- I could watch him walk forever), smile, play etc. I try to be proactive, but some things are just out of my hands.