by James Hill, sullivan boutique.com

This is how I feel right now. Very pensive. This has been such a hard year and I worry that next year will not be easier. I hope it will be better even if it's not easier. Drew comes home probably Monday, maybe Tuesday. He's very antsy and irritated especially the last two days. He hates being in the hospital especially when he doesn't feel bad. He gets bored waiting around for doctors to see him. And of course nothing will happen over the wknd. They don't have anything more they can do medically at the hospital anyway. What he needs now is physical therapy in an out-patient facility, home care nurses for the dressings again and counseling to deal with all this. Unfortunately, nobody alerted him about pressure sores when he first got a wheelchair which was a big mistake. He had no idea these were so prevalent and dangerous. That's another thing, he'll need a new chair, too. It's too old now anyway, it's only his 2nd one in 7 yrs. He got it right after I met him. There are things he'll have to do at home every day to prevent these things and we will also go to a research institution like Stanford or UCSF to get more information about how he can take care of himself best for his situation. And maybe further developments in the field.

He has been to the Mayo clinic, back in '99, about a yr after he got sick with viral encephalitis. But they didn't do a complete analysis back then cuz he was finishing his BA down at UC San Diego that year and had to go back to to finish finals. He's not happy about the lifestyle changes the doctors are recommeding. As he told me he's not good with change. Unfortunately, his body will dictate that this change must happen. Very few people our age have to make lifestyle changes which is what makes it hard. Think about how few of us eat healthy until we're told we have heart disease in mid life. We're at an age where we still think we can do whatever we want and there's little consequence. He doesn't have that luxury now. Please think of me as I try to get him to see how necessary these everyday changes are to healing and prevention of further problems.

He's a very smart guy so I know he will come around but right now he's just pissed off. He has so much upper body strength. He's been doing freaking chin ups on the "trapeze" they have mounted above the bed. This makes him feel better about his physical abilities. Only time I've seen him smile lately. They plan to put a trapeze on his bed here at home, too. And there's lots of other things he can do. Prob some we don't know about, too. He's so good to me, now he just needs to be better to himself. Not be hard on himself about his body and circumstances. Which I'm sure I'd have a hard time with, too. So think of him on that end. Thanks.

His dad and I did go to the Italian Club to find out what our menu could be for the wedding. We didn't get to taste anything though. Man! Next time Drew can come and we'll do that. And then cake, mmm... have a good wknd all!