Wednesday, November 14th - Ups and Downs

Good evening everyone. So I know when I have neglected you all when my friends call and start asking about Alex. I love to talk to my friends and so I reluctantly post this update. (that's a funny!) While we are on the topic of friends, I want to say that I have noticed a universal reluctance of close friends to discussing any events, thoughts, or life issues that are on the negative side. I just want to say, "CUT IT OUT!!" I am your friend in good times and bad and I don't want to be treated with kid gloves because Alex has brain cancer. It is not fair that I don't get to be your real friend anymore. Do you really think I want to hear how great things are with you? NO!!! I want to hear your shit and your irks and your frustrations! Please! Let me be a real friend. Don't take that away from me! Is that how I am supposed to treat you when life gets rough for you? Is it all about me? No! Let me be there. I really hope this message is received well. There is no one person that this is directed at. I think the natural tendency of kind people is to be kind and gentle but enough is enough! I'm completely bored, let's spice this up a little!!

Okay, done.

So Alex received his new "power chair" on Monday. He seems to really enjoy "having legs again". You should have seen how excited Zoe was to have her brother ambulatory again. She was absolutely giddy! When Alex went to bed Monday night he said, "this has been a great day!" He even asked if we could take Roxie for a walk on Tuesday. That did not happen, but it is on the agenda.

Alex seems to be "changing". His voice is softer and his drool is much worse. Today his feet and legs were quite cold up to his mid calf as well as his hands. He seems to be dehydrated for the first time since hospice care began but I must say this morning he was incredible! Alex had "evil OT/PT" this morning. He has been referring to it as "evil" because he gets to do bad things like throw leather bugs at his mom and Noni. He gets to kick large blocks and cylinders on us as well. This morning we had an upside down, backwards and opposite day! It was tons of fun driving to his appointment and pointing out the submarines, noodles and whales! Alex decided to stand on the platform swing today and knock blocks onto my back! This morning was really great. That is just how it goes around here. Up then down, then down then up! Flexibility and stamina are key!

So I am having a hard time believing next week is Thanksgiving. Were has the time gone. Did you know that today begins the 9th week of hospice care? These docs don't know anything!! Nonetheless, we have decided not to move forward on the MRI. The benefits just don't out way the risks!

Okay, dinner time and I need to get. Thank you all for your support! WE love you all!

God bless!
G