Avery has been doing really well respiratory wise lately. He has gone about 1.5 weeks without o2 at night unless he is on bipap which is a Miracle. This sudafed has really done wonders for him in that respect. However, his spasicity has been really bad lately. He is up alot more at night screaming in pain and very stiff and uncomfortable in his own skin during the day. The Pallative nurse is coming tomorrow with flush his port and will work with us to adjust his meds. Hopefully this will work. We are so close to getting him to the point of feeling good most of the day. I am so eager to do this for him so he can regain some sort of life. As you can see by the last pictures what he can do if he feels good. You surely don't want to see pictures of what he looks like when he is not feeling well.

Isaiah is still having tons of leaking which I do believe is a motility issues which is not good. So I know I will not put another hole in him at this point. I am going to see if we can try some other meds and get more testing in for him. But again it is all the process of this terrible disease. He is doing great otherwise and really learning so much at school.

Things othewise are pretty quiet around here.

Happy Halloween!!!!!