Sunday..... Grier is doing about the same.... still not eating and only taking sips of "shasta"--- I can not even begin to try to spell it the way he says it.... it is funny... I really don't care what he drinks at this point... just something....

We added a baseball tournament into our crazy schedule this weekend... and it was fun to be outside and not confined to the hospital... with the help of Jeff and my mom.. Grier was well taken care of--- The hospital time I spent was kind of crazy--- trying to get medicine worked out... and doing things "my way"--- AND let me say I am not picky but I want things done on a timely manner.... We did have some issues this weekend with Grier's TPN-- it stopped working..basically clogged the tubing so it made the pump beep all the time... it happened on Thursday night too but our nurse worked with it and had it re-tubed at pharmacy--- this time it was "trashed"--- yes I was a little questionable about that decision because they did not replace it for about 18 hours... and the fact it is expensive... $1000 a bag!!!! So, I said jokingly .. did you deduct that from our bill??.... and it all kind of started... WHATEVER... I am so sick of tip toeing around nurses personalities.... I really thought they could bring up a new bag quicker... but that is not the case...

Grier was unhooked today while we waited for TPN to come up for the night so we took advantage and went to the 12 floor to be outside... he seemed to really enjoy being outside and laughed and smiled with Hayes and Grace as they pushed him around on a table w/wheels---- yes a little dangerous with low platelets.... but it was worth the moments I had to shut my eyes to see him look so happy.

Still no movement with counts-- so he is there until that happens and when he eats and drinks....

I was called a "bulldog" tonight... I guess they do not like being questioned about why things take so long and asked about medicine.... really??? I do not think I am ... but I am sure it is what I call "putting my NYC on"---- funny I have been told a few times this week by friends how they think I have changed.... YES -- probably true... I would find it hard NOT to change after living this life after 3 years.... I am just trying to balance normal life with chemo side effects.... I no longer just let them do anything... I ask lots of questions and now have lots of friends that have done this before me..... I am Grier's advocate.... no other words for it...not that I wasn't before... but I have seen how some things work for him and some don't and I don't care where we are LCH or MSKCC -- I am going to ask you to do it the way it works for him.


On a side note... Grier's hair started falling out today... he is a little bothered by it because he says it "hurts"--- his head may be tender...

Thanks for all the visitors this weekend.... and my new hat that says "cancer sucks"--- I actually was wearing my Life is Good hat and put a Cookies for Kids Cancer sticker over the Life is Good part.... not that life is not good... BUT it could be a lot better and yes a lot worse!...also thanks to Ed for coming to out my headboard together... and thanks for taking Hayes to the games.... and anything else I am forgetting..... THANKS!