Avery has been REALLY struggling with pain. It is so heartbreaking to see. I had a conference call with the pallative team from the hospital, we are making med. adjustments over the weekend and they are coming for a house visit on Monday morning. Not sure is this is just more progression of his disease or if it's his gut. Really hard to tell b/c he cannot tell us. For the weekend I decided that I am only going to give him water through his j tube at 10cc an hr. just to keep stimulating his belly , I am not going to worry about the calories as he is now getting more than enough through his TPN. I hope this is the cause of his pain b/c we as least have a way to fix it but if not then it is alot of tweeking with his medications. This is by far the worse part of this horrible disease, watching my baby go through such horrible pain that I cannot give him much relief from. Very depressing.

Isaiah is doing well. Thank god for pee. He is back to urinating normally and is feeling great. Back to his stinker status. This is all good because he is back to school on Monday. Hoooray for school for everyone. I love geting back to a routine.

A BIG CONGRATULATIONS To Rick's CENTRAL CATHOLIC Basketball Team for winning the Christmas Tourney last night. Very tough game but the kids did great. Very proud of them.