We heard from the Surgeon and we have plans to go to Mayo next week for appt with him and a PET. We e-mailed him pictures too. Thank you for all your concern and posts. I wrote a more detailed post under Intro Yourself forum so to not repeat myself to much I am happy with the plan.

Suez - that is crazy what you are going through too. Emmett takes nothing by mouth - not even water which he should be, so I know he hasn't burnt his tongue but I will make sure I don't use anything he has.

Cheryl - I hear you and I agree. The problem is my husband takes a more "head in the sand" approach and I want to hit it head on so I feel like I am always pushing and since he is not really able to express himself easily I worry I am pushing him into something he does not really want. Like the surgery, when the Dr. described what would be done - he first said he didn't want it. Since it has changed his life so much (and he has aged before my eyes) I sometimes worry he had it just for me. It feels like a really fine line we walk. Emmett says he want to fight but his actions say something else. So I get confused. Okay I am getting carried away and this probably should be in the caregiver forum. Sorry. We wish you the best with your surgery!