Things are actually pretty quiet right now. Meaning, no hospitals or major disasters. Avery is his typical junky self and still waking up tons at night or desatting (dropping his oxygen levels which is not good) but at this point I am so used to it. My regular nurse has been here now during the night and apparently I wake up every coupleof hrs. saying " Is that you". So it will obviously take me some time to get used to night nursing. While she has stayed, she has had to adjust is bipap mask every 15-20 mins (No wonder why I don't sleep)....

Rick and I have been having alot of talks lately. You know the ones that you really don't want to have but need to have. We have been really thinking about if Avery does die, is it better or worse for us and Janessa if it happened at home or in the hospital. Again, not something that you want to discuss but have to. Her social worker came today which is so good for her. I asked what her experience was with this and she said that siblings tend to do better if the other sibling dies at home and they are part of the process. Something about that is just not right to me. I mean if I had a choice, I really think it would be in the hospital and have Ness come and say goodbye while he was on a vent. But who really knows what the right thing is. This is when my faith kicks in aand praying that God knows how he wants it to go down.

We also discuss cremation vs. burial. Again, all really icky things but a fact of life. We are all going to die at some point. Never could imagine that I would have to have these discussions but we have too.

I am really trying to enjoy all of his good days b/c we have been getting alot of that lately and cherish all of it. But I also have to be realistic at the same time. KWIM (know what I mean). Every day is a gift for sure.