223AR,
friend, I am fairly new here, but we have something greater in common than probably any other 2 people on this board. Circumstances are different, but I can say with certainty of heart that I know what it's like. Not just sympathize, but know it.
My son Dean was born in Sept 2005. When he was 4 1/2 weeks old, he stopped breathing one night after his bath. My wife and I both performed CPR on a 7lb baby until paramedics arrived. Dean was in and out for extended stays in the ICU a half dozen times before he was a year old, and there were 3 more CPR incidents in our home. Along the way we were told he could not be expected to ever walk, talk, etc. Choking spells were frequent, and seizures started around 9 months. But it wasn't until he was 13 months that they finally diagnosed it .. Rett's Syndrome. It's a genetic mutation in one gene that results in a progressive neurological degeneration that is devastating to girls (but they can survive 30-40 years with it), and terminal for boys. In fact few boys with Rett's are even born alive. The case study we were shown involved 24 boys found alive with the condition, and it lasted 2 years. At the end of the study, 2 were still alive and one was on permanent tracheostomy ventilation. We knew then our son was going to die, but we fought almost another year, keeping a 24 hr watch, before finally losing him in Aug 2007. He was 23mo. old, and died in our arms.
During all this I sold off guns, guitars, jewelry .. practically anything that could be turned into cash went out the door. I wrangled with my employer over family medical leave, went for months without pay, went totally broke and beyond, nearly lost the job a couple times, and slept no more than 3 hrs a day for about 19 months straight while working full time and watching the baby overnight. It is amazing one can cope with all this stress and be simultaneously living with the weight of your child's health being destroyed before your eyes, but I did, and I can see that you have persevered as well.
I saw this thread tonight and from page 1 expected to eventually see the worst ... praise God that your son looks like a survivor! Never neglect an opportunity to let him know you love him and that he's your hero. I know he is, because I know who my hero is. I'm just very happy for you that you still have your boy.
I know the world you've been in this last year. You know, as I do, that the world of people with 'normal' lives around you is oblivious to the existence you're living now. Even those with good intentions and a helping hand are clueless, but thank God for 'em anyway. I've told a lot of people ... before Dean came along I thought I was a grown man ... house, wife, kids, job ... but I was only a child. Dean made me a man. I'll bet your boy's done that for you, too. Hang in there. Drop me a pm anytime.