Day 503 - Oct 14, 2009

Today was a better day. Kevin was in a better frame of mind and was even patient while waiting at the doctor's office for him to get out of surgery - and this was after driving around for a half hour trying to find a parking spot. We actually missed our therapy because we couldn't find anywhere to park, which is just not good.

And unfortunately, we still need to leave the drain in his head because he is still putting out the same amount of bloody fluid (about 30 ml a day). We are becoming used to it now and have figured out ways to 'rig' it with a safety pin so that it stays up near his neck and doesn't hang down painfully. We tape it to the back of his neck while he showers and it's really working - like things always do once you figure out how to get around the rough spots.

And now I am just going to touch on some of the comments today as there were some great ideas.

First - to the people that seem to despise the three of us - you don't bother me. See, I know the truth about what our lives are like - you don't. You ASSume you know, but you honestly show your ignorance by posting things that are not true.

This is also true of and I also feel sorry for the person that turned this into a money issue. Someday, I hope you realize that life really isn't about money - it's about loving your family and friends and feeling bad for the horrible changes in life.

As to the person who offered me a tissue - thanks. I'll take that tissue! Some days are harder than others in dealing with the magnitude of our loss and on those days I would love to learn how best 'to deal with it' as you requested. Maybe next time - instead of being nasty - you can offer some good advice that might just help.

Lisa D in Cali - Kevin isn't really willing to negotiate very often. I don't know if he understands the concept or not, but for the most part he is just too set in his ways.

To mamaworecombatboots - I never once thought about this being like autism - especially Aspergers. I will definitely research this as it sounds like Kevin and your daughter have a lot of the same symptoms. Thanks! And best of luck to your daughter too!

Alison - Sometimes Kevin's short term memory works - sometimes it doesn't. Sometimes his long term works - sometimes it doesn't. He also can write only a few words. He doesn't know how to spell anything as he doesn't know his alphabet anymore (but he knows his numbers and can do math quite well). And your idea fell in with Long Time RN's so I am going to move onto hers.

Long Time RN - I like the idea of the timer. I don't know if he would understand though. Right now he has a watch that he looks at constantly (he can tell time) and like I said - one minute he looks at it and understands, but then the next he loses the brain function and he forgets. The timer is something I am going to try though. You just never know. Great idea!

To Janet - I know you called me yesterday, but I haven't had time to even listen to the voicemail yet. I hope Matt is feeling better after his surgery? Did they get the equipment necessary to exercise that arm/hand yet? Love ya!

Miss Em - (how are you recovering from the floods, btw?) - you expanded on Long Time RN's idea with the timers. It is definitely worth a try. You also mentioned having other therapists sit in with Pam until Kevin gets used to them. He has had others in the past and sometimes he is willing to deal with it, but mostly he is not. It's really Pam's fault as she is just so dang wonderful (right, Pam? LOL) Seriously tho - they just have such a bond and he looks forward to seeing her and gets upset when she's not there.

Ok - there are more, but I am trying to get sick and need to get to bed. I have been coughing for days and I feel so run down. I have a couple things to do first, but then I am down for the count.