It's been a good day for the most part.
Camp was AWESOME at Romp n' Roll today. We had a great crowd of kids and a lot of fun was had by all. Then I got to have lunch with 2 of my girlfriends at a park in Church Hill (more Christophers...YUM).
Charlotte slept a LOT last night, going to bed before 9 and then getting up after 9 the next morning. The medications are STILL an issue and we ran into an even bigger issue after the new strategy (sneaking the medicine into chocolate milk) completely backfired. She tasted it right away and was very upset at the nurse who told her "there isn't any medicine in it". We did get her outside a bit on this BEAUTIFUL day. She is getting the last bit of her chemo tonight and we should be getting loaded up with fluids and will go home sometime tomorrow. Hopefully earlier rather than later...
Very much looking forward to the Head Shaving party tomorrow. There's been so much good energy behind it and I think that is having a positive effect on my energy and mood. To me, it doesn't matter how much money is raised (but I am EXTREMELY grateful and excited by everyone's efforts. It will REALLY help us a lot). The most important part of it all is an opportunity to show some "solidarity" for my favorite little bald chick and have a chance to play, laugh, and socialize.
We are playing a Charlotte "appearance" as a wait-and-see depending on many factors. I would love for her to be there but we don't want to overdo things.
I keep thinking that I have something else to say but it's not coming to me right now so I will just sign off...Charlotte is watching a Best of Elmo video and it is great. Lots of vignettes with Elmo appearances on Sesame Street including making Angry Faces with a very young Julia Roberts and talking with Whoopi Goldberg about her "fancy hair" (dreads). Too cute!
Update from Roger:
Well, while Rachel was having her great day at camp, I was having a ball doing Romp n' Roll To Go at Primrose at Atlee Commons. Got yet another new sign-up today (I think it's up to 13 now) so I guess word's getting out. Very cool. I got a very rough estimate about how much their Spring Fling raised. The initial estimate is approximately $2000, about half of which will be going to A.S.K. in Charlotte's name! Awsome folks, thanks!
Now, it's been a while since I've posted, mostly because Rachel has been on it and doing a great job but also a little bit because I got us in trouble with risk management for saying too much secret stuff. Rachel got the lecture from the suits which is very funny (funny - strange, not funny - haha) in a way (not to her) because she could have given them the lecture on how to do their job, not the other way around. Sorry I made you endure that, dear.
I also think they're mad that I sometimes let it slip that some of their medical staff are a bunch of bone heads who tell bald faced lies to my daughter about medicine in her sippy cup. What was with that?!? They obviously don't realize that she's smarter than most of us put together. Her catching them lying to her was damaging and it's just one more insult adding to her injury with which we'll have to deal. That's the kind of stuff people file lawsuits over.
I'll say again, I'm more than a bit underwhelmed with the quality of care we've received this time around. Some child psychology training might be in order before they work in peds. Thank God for Monica who I guess helped smooth at least some of the mess out. She also has really helped our mental status on more than one occasion. With all my griping, the psych Dept at MCV has proven to be top knotch.
So let's try to be positive: Psych Dept. - Good. Hem/Onc Dept. - Good! Pediatric neurosurgery - GOOD! Monica with the meal cart - Good. Child Life Dept. - GOOD!!! PICU - Good! Med students - pains in the asses but one of them will probably save my life one day - GOOD!!!!!
On to other items. Head shaving party. Can't happen soon enough! Gotta get this stuff off of my head. It's itching constantly and driving me batty. Not to mention it's super way disturbingly silver and grey! :-) I knew the white was pretty prevalent in the beard but didn't think that it would have spread to the head. (There are lyrics to a song in there somewhere).
Extra side note: Someone cleaned the house again (thanks probably Granny, Gramps, and/or Uncle Kolbey) and the floor in the office is kind of slick so my feet keep moving of their own accord. Could be kind of creepy if I hadn't already had a little smackeral of something Kalua-esque (sp?)
To the Montesorri clan, I just tapped a pan of lazagna from the deep freezer and BOY! was it tasty! The freezer and all the food in it has been, hands down, the longest lasting utilitarian gift we've received.
So back to the head shaving party...It's going to be a blast and I'm worried it might be too good. Please be patient if chaos reigns. My clippers and electric razor are ready to take care of your cranial exterior and I'll be on WHAN 1430AM again tomorrow at about 7:30 talking about it. Bob Flannagan might make an appearance as well. Any of you competing for the coveted "Bowl Of Hair Clippings Award" may come by too if you can get yourselves out of bed.
Take care everyone. Have a good Good Friday.