Crap...crap...crappity crap crap...
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
Showing posts with label A.S.K.. Show all posts
Showing posts with label A.S.K.. Show all posts
Thursday, April 16, 2009
Thursday, April 9, 2009
It's been a good day for the most part.
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.
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.
Monday, April 6, 2009
Parents Have to Be Advocates for Their Children
Just about 4am (as you can read intelligent CJ lover) and we just had an interesting experience. It's also reason #42 why parents have to be advocates for their children.
Because the central line pulled out, they had to put a traditional IV line in her hand-not a lot of fun. When I got here everyone informed me they would have to poke her again to draw blood for her labs and, of course, they couldn't do it at any kind of sane hour, NOOOOOOOOOOOOOOOO!!! They have to do it at 3am because that's when they have to check her numbers.
So,
I settle in at around 11pm to see what kind of sleep I can get from this very noisy room and slightly lopsided chair knowing what's coming at 3.
Now being the kind of guy who gets a little freaked out about oversleeping when there's an early wake-ups time, I was up just about every hour until 3 when, as usual, nothing happened. (Hospital standard time). The nurse came in to do vitals and in the back of my mind, I was actually hoping they had decided to wait. No luck. On her way out the door after the vitals check, she warned me it would be about 10 minutes.
It was more like 7. Which is good because it didn't give me the chance to fall back asleep.
So,
in comes the nurse and another woman, presumedly (sp?) to hold Charlotte down. Of course, that's my unpleasant jorb. (yes I said, "jorb." That's the next trivia challenge...) Turns out the other woman was the one doing the actual poking. That, believe it or not, made me feel better as the night nurse, nice as she is, doesn't seem all that secure doing procedures above and beyond taking vitals and hooking up drugs to the pumps. The other nurse, Mary, came down from the PICU and we all know how highly trained they are down there. She said she gets called out to do draws all the time because it's so difficult to access little veins.
So,
I at least feel like CJ is in capable hands. I get on the bed next to her and shield her eyes as they lights go on and the "big rubber band" gets tied onto her other arm, which she doesn't like and lets us know. I mentioned out loud that they should have some kind of topical cream that would numb the pain right at the site. (There's a really bad movie in there somewhere with Phil Hartman and Sinbad involving liquid novacaine and mistaken idenity.) Can anyone tell me why they don't use it in hospitals for little pokes and things like that?
I'm thinking, "This is REALLY going to suck. I'm getting ready to help them inflict more pain on my baby and she'll be wide awake screaming and I'm never going to get a shower." (Yeah, selfish, I know)
Then I remember something the night nurse mentioned, totally in passing just after Rachel left, about pulling blood from the IV line and how she was scared to try it because it might pull out the IV which would be far more tramatic for Charlotte. Almost in desperation, I said, "So there's no way you can do this through the IV line?" Nurse Mary from the PICU looked up like the lightbulb went off and said something like, "Hey, let's try that."
Bless her and all her progeny from here to the mext millenium. It worked and all CJ had was some minor discomfort from the "big rubber band." She was out again in about a minute, and I'm not exaggerating.
Of course, I'm wide awake and about to get my wonderful shower.
So let that be a lesson to you. Ask those "dumb" questions and be the obnoxious, persistant parent.
In my hyper emotional state, I think "Mary" just made it to the list of potential names for future children/pets behind Tye, Joanne, Kahn (only as a Trekkie pseudonym), Melissa, etc...(about 10 others)
Speaking of that, we forgot to mention that Charlotte went by the PICU for a walk and just happened the see Nurse Melissa and another nurse, whose name I'm ashamed to say I've forgotten, near the front doors. They certainly remembered her and came out to fawn (faun?) all over her. She didn't mind.
So,
After having Leah's death weighing pretty heavily on me for most of the evening, we had a sliver of a good thing happen. It's all we can ask for, right?
The spring fling at Primrose went smashingly and a good chunk of money was raised for A.S.K. in CJ's name. Thanks to all there including the teenage volunteers and especially to Karen Giles who allowed me to leave and go perform with John Robison from Southern Horizon at the Confederate Heritage Days celebration down at the Old Chester Courthouse. (There's some irony in there somewhere)
An aside: Although I really love playing the music and I'm becoming a student of the history behind the "War of Northern Aggression," I think some folks need to realize that the Civil War is over. I used to think that sort of thing was just reserved for geeks like me who got caught up in the Renaissance Faire mentality. (Man, I loved those days!)
Hey, did I mention we're having a head shaving party Friday?!? :-) The golf tourny and other various fun-raisers are being planned and I'm blissfully unaware of most of the details. Just point and tell me to go, I'll be there. You'll probably know about it before I do.
Wesley Berry's family (who we met here) is having a golf tournament Friday April 17 up Cameron Hills Golf Links in King George County. Romp n' Roll is going to sponsor a hole and donate some prizes. Here's the link to a story about him:
http://fredericksburg.com/News/FLS/2009/042009/04032009/455786
Go play a round for us.
It's now 5:00am and I still haven't showered. Here I go.
A Quick Update before going home for the day:
It was a great day at Romp n' Roll and Roger and I have been busy all day. Roger is now up in Caroline County launching our Adventure Classes at Ms. Alisons!
Charlotte is doing ok from what I understand. We FINALLY got a call from the surgeons asking for permission to re-insert her Central Line and that will happen first thing tomorrow morning. I don't have news on her methotrexate levels but I understand she was peeing like a racehorse today and eating well. Not sure if she's pooped.
Thanks to the Masseys for visiting with Easter Baskets. Riley's second grade class actually made baskets for all the kids on the floor and delivered them to Child Life today. What a sweet gift!
Now it's time for me to call gramps and get picked up from work. Did I mention that the alternator in my car died? More joy to the world.
On a positive note, I spent the morning running errands and got to listen to my This American Life podcast which was full of fabulous stories (as always). And through the rain I got to see a pretty cool rainbow while trekking down I-295. Plus I got to hang out with some pretty cool kids at Romp n' Roll today! At least I can find some joy in the day.
Time to sign off...my chariot awaits.
Rachel
Because the central line pulled out, they had to put a traditional IV line in her hand-not a lot of fun. When I got here everyone informed me they would have to poke her again to draw blood for her labs and, of course, they couldn't do it at any kind of sane hour, NOOOOOOOOOOOOOOOO!!! They have to do it at 3am because that's when they have to check her numbers.
So,
I settle in at around 11pm to see what kind of sleep I can get from this very noisy room and slightly lopsided chair knowing what's coming at 3.
Now being the kind of guy who gets a little freaked out about oversleeping when there's an early wake-ups time, I was up just about every hour until 3 when, as usual, nothing happened. (Hospital standard time). The nurse came in to do vitals and in the back of my mind, I was actually hoping they had decided to wait. No luck. On her way out the door after the vitals check, she warned me it would be about 10 minutes.
It was more like 7. Which is good because it didn't give me the chance to fall back asleep.
So,
in comes the nurse and another woman, presumedly (sp?) to hold Charlotte down. Of course, that's my unpleasant jorb. (yes I said, "jorb." That's the next trivia challenge...) Turns out the other woman was the one doing the actual poking. That, believe it or not, made me feel better as the night nurse, nice as she is, doesn't seem all that secure doing procedures above and beyond taking vitals and hooking up drugs to the pumps. The other nurse, Mary, came down from the PICU and we all know how highly trained they are down there. She said she gets called out to do draws all the time because it's so difficult to access little veins.
So,
I at least feel like CJ is in capable hands. I get on the bed next to her and shield her eyes as they lights go on and the "big rubber band" gets tied onto her other arm, which she doesn't like and lets us know. I mentioned out loud that they should have some kind of topical cream that would numb the pain right at the site. (There's a really bad movie in there somewhere with Phil Hartman and Sinbad involving liquid novacaine and mistaken idenity.) Can anyone tell me why they don't use it in hospitals for little pokes and things like that?
I'm thinking, "This is REALLY going to suck. I'm getting ready to help them inflict more pain on my baby and she'll be wide awake screaming and I'm never going to get a shower." (Yeah, selfish, I know)
Then I remember something the night nurse mentioned, totally in passing just after Rachel left, about pulling blood from the IV line and how she was scared to try it because it might pull out the IV which would be far more tramatic for Charlotte. Almost in desperation, I said, "So there's no way you can do this through the IV line?" Nurse Mary from the PICU looked up like the lightbulb went off and said something like, "Hey, let's try that."
Bless her and all her progeny from here to the mext millenium. It worked and all CJ had was some minor discomfort from the "big rubber band." She was out again in about a minute, and I'm not exaggerating.
Of course, I'm wide awake and about to get my wonderful shower.
So let that be a lesson to you. Ask those "dumb" questions and be the obnoxious, persistant parent.
In my hyper emotional state, I think "Mary" just made it to the list of potential names for future children/pets behind Tye, Joanne, Kahn (only as a Trekkie pseudonym), Melissa, etc...(about 10 others)
Speaking of that, we forgot to mention that Charlotte went by the PICU for a walk and just happened the see Nurse Melissa and another nurse, whose name I'm ashamed to say I've forgotten, near the front doors. They certainly remembered her and came out to fawn (faun?) all over her. She didn't mind.
So,
After having Leah's death weighing pretty heavily on me for most of the evening, we had a sliver of a good thing happen. It's all we can ask for, right?
The spring fling at Primrose went smashingly and a good chunk of money was raised for A.S.K. in CJ's name. Thanks to all there including the teenage volunteers and especially to Karen Giles who allowed me to leave and go perform with John Robison from Southern Horizon at the Confederate Heritage Days celebration down at the Old Chester Courthouse. (There's some irony in there somewhere)
An aside: Although I really love playing the music and I'm becoming a student of the history behind the "War of Northern Aggression," I think some folks need to realize that the Civil War is over. I used to think that sort of thing was just reserved for geeks like me who got caught up in the Renaissance Faire mentality. (Man, I loved those days!)
Hey, did I mention we're having a head shaving party Friday?!? :-) The golf tourny and other various fun-raisers are being planned and I'm blissfully unaware of most of the details. Just point and tell me to go, I'll be there. You'll probably know about it before I do.
Wesley Berry's family (who we met here) is having a golf tournament Friday April 17 up Cameron Hills Golf Links in King George County. Romp n' Roll is going to sponsor a hole and donate some prizes. Here's the link to a story about him:
http://fredericksburg.com/News/FLS/2009/042009/04032009/455786
Go play a round for us.
It's now 5:00am and I still haven't showered. Here I go.
A Quick Update before going home for the day:
It was a great day at Romp n' Roll and Roger and I have been busy all day. Roger is now up in Caroline County launching our Adventure Classes at Ms. Alisons!
Charlotte is doing ok from what I understand. We FINALLY got a call from the surgeons asking for permission to re-insert her Central Line and that will happen first thing tomorrow morning. I don't have news on her methotrexate levels but I understand she was peeing like a racehorse today and eating well. Not sure if she's pooped.
Thanks to the Masseys for visiting with Easter Baskets. Riley's second grade class actually made baskets for all the kids on the floor and delivered them to Child Life today. What a sweet gift!
Now it's time for me to call gramps and get picked up from work. Did I mention that the alternator in my car died? More joy to the world.
On a positive note, I spent the morning running errands and got to listen to my This American Life podcast which was full of fabulous stories (as always). And through the rain I got to see a pretty cool rainbow while trekking down I-295. Plus I got to hang out with some pretty cool kids at Romp n' Roll today! At least I can find some joy in the day.
Time to sign off...my chariot awaits.
Rachel
Thursday, April 2, 2009
Another Great Day for Charlotte. She is Amazing!
I am changing the time zone to "Hawaii Time". Maybe that's wishful thinking...
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel
Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?
Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel
Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?
Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.
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