Everyday Gets Easier ( life after the diagnosis)

It's Saturday morning. The time most people look forward to relaxing and catching up on sleep. 6:00am the alarm goes off. I wish I could snooze but I know my baby needs me. Sound asleep I walk into his room. Sweet baby sleeping without a care in the world. I have to give him his injection and beta blocker. Most of the time he stays asleep and does not even allow it to effect him. Other days it is hard watching his little facial expression as i inject him. He is a really good sleeper for the most part. 2:00pm, time for his second dose of bate blocker. That particular medication is not so bad. It has a grape taste and it is really sweet. Usually after he takes that medications, it makes him sneeze. I am not sure why it has that reaction on him. Around five or six o'clock I give him 1 baby aspirin ,81 mg.With all the medication Noah takes on a daily basis, some how does not manage to keep him down. Doctors have told me that with his condition expect him to set back a bit. They advise me that due to the lack of oxygen and blood flow through his arteries, he may not be as playful and active as your normal 3 year old. That was far from the truth. He is so energetic, playful, talkative, intelligent, outgoing, observant,  and has an ear for music. He is very opinionated. I still monitor while he is playing and becoming active. I make sure he takes breaks and is very hydrated. The afternoon dose is not so easy. 6:00pm Noah gets his second shot. This time, he is very alert and aware of what is about to happen. There was a point where I was able to inject him without an issue. I guess, just like everything else, it gets old. I mean, who will ever get use to being injected twice a day. These days Noah puts up a fight to receive the second injection of the day. Sometime he says things like, " mama, I don't want to get a shot", and other time he tells me"I'm not your friend, I'm mad at you". That broke my heart when I first heard that. No parent wants to be the villain. I know at times he is just tired of having to go through this every single day. I do not blame him. I want this to be over just as bad as he does.  8:00pm is the final dose of the bate blocker. That completes a day in the life of Noah's daily medication or should I say, the night is coming to a rest on till 6:00am the next day. It was very hard at the beginning. Since Noah has been dealing with this since thirteen months old, this has become a life style for him and everyone around him. He knows he has to take his medication to keep him stable. I tell him "God made you special baby , because he loves you."  He just smiles back at me.

This was Noah at 13 months old listening to music and trying to create a song.

That is a day in my life to keep Noah stable. We continue cardiology check-ups every 3 months. Running all sorts of test like EKG, echo, blood, work, and heart monitor halter. Just this pass December 2010, we received amazing news that the aneurysms on his left coronary arteries have gone down a bit. That was a great way to end the year. Doctors advise it is best to keep Noah on the aggressive treatment. His body is too weak and not mature enough to under go surgery with a good outcome. We hope that as his body grows, the aneurysms will continue to reduce in size. Not totally excluding surgery out of the picture, but having the outcome of surgery and recovery looking brighter and brighter. On till then, Noah is adapted to his life style. It is the only one he has ever known. I keep greasy foods to a minimal and caffeine out of the equation since they contradict with his medication. I thank God that he is a hyper little boy, and not effected by his illness. The fact that he keeps going, keeps me going as well. It does get easier. I look at my boy as a walking miracle. That alone keeps me fighting!!!!