Wow! Y'all had to wait nearly two full days for an update. Sorry it took so long. This one will be another epic. In Word it was 4 pages long!
Just got done trading harrassments with my wife so now I'll concentrate on the update.
To start off, Katie Udell down under, the t-shirt was made by the mother of one of our friends and Romp n' Roll regulars, Megan Blake (also, and most unfortunately, another Caringbridge member). I told her she could start a little cottage industry making those. By the way Megan's mom, any way we could get a new pink one in a 5-t for Charlotte (her's is getting a little grimy and she loves wearing it) and a matching one in Large for a woman here at The House? I'll GLADLY pay for both. I'm telling you, they would be lining up if they could get them out.
OK, wow, where to start. Yesterday, we sort of slept in and still noodled around part of the morning after we got up. I was going to try to go the big dog show that was going on at the Reliant Center just down the road. If figured CJ would like it and I knew I would totally love it. Especially if I got to see some of my favorite breeds up close.
Things were progressing nicely, we were getting dressed, snacking, reading, watching videos…Then I tried to get CJ to brush her teeth. Holy Mother of Rhodes! Saying she had a melt-down is like saying the QE2 is a big boat! And we had been doing great up till now.
Thus started about a two hour wrestling match during which I actually got her to promise that if I didn’t make her brush her teeth, then she had to take her vitamins. That lasted until she got a vitamin, which she used to LOVE, near her mouth. Melt-down Part Deux! Then it just dissolved into crying and screaming for no apparent reason. She told me that. I asked her why she was crying and she said she didn’t know but she certainly was shedding a river of tears. I tried to take her downstairs to play…no deal. When I finally did get her down to the lobby, she found occasion to cry at every turn. She wasn’t mad at me as she clung to me on the couch and didn’t want to let go.
I had spoken to a woman earlier about bringing her daughter with us and “carpooling” to the dog show (her daughter was to undergo brain surgery on Monday-today) but I wasn’t sure we’d even get out the door the way things were going.
When it got to be now or never time, Charlotte settled down and told me she still wanted to go to the dog show so we packed up and headed out. I wasn’t feeling very optimistic that CJ would last very long but one cute thing she did was leave Mickey on the bed saying that Mickey was a mouse and we were going to a dog show. Then I suggested we take Rompy and she thought that was mildly amusing.
From here out, she was an angel. Guess she just had to get it out of her system. She sat in the stroller and actually wanted to be where Calle and her mom were and paid attention to the dogs we were viewing. She really like the obstacle course where the dogs jump steeples, go in and out of slaloms, and zoom through tunnels.
We saw dogs of every shape and size including a great dane that seriously considered devouring Rompy and I got to see some of the most beautiful animals I have ever seen in my life. Alaskan huskies, bull mastiffs (one was 225lbs!), and the biggie, Bernese mountain dogs! Ah, yes. Go here and feast your eyes. http://www.google.com/search?q=bernese+mountain+dog&rls=com.microsoft:en-us&ie=UTF-8&oe=UTF-8&startIndex=&startPage=1
I didn’t get to see any Irish wolfhounds which are the other favorite of mine but there we lots of Bernies to behold. There were booths with the various breed rescue organizations and I saw the beagle booth but they only had one very old beagle that wasn’t very representative of the breed. Seemed kind of strange. I saw no other beagles the whole time we were there. Beagles and beagle mixes are just about the most common kind of shelter dog (at least around Virginia) and they make awesome pets. We’ve rescued all of our animals and totally recommend everyone do the same. I love looking at the purebreds but in the end, a shelter dog is a better choice for us.
So, back to the story, after a bit, Charlotte actually got out of the stroller and walked quite a while. We then decided the kids had seen enough and we headed back. It was a very nice event and the fact that it was 5 minutes from The House was bonus.
Later that night we went to the airport to pick up the Beazleys and relinquish the truck. It was coming up on 9:30pm by the time we picked them up and started back and Charlotte zonked on the way. In the confusion of the load-out at The House, I left my cell phone in the truck! Talk about fortuitous circumstances, I didn’t have either of their numbers memorized and almost panicked BUT, it just so happens that I had started compiling a list of our Houston contacts “just in case.” I was actually going to leave the Beazleys numbers off because, hey, they’re already programmed into our phones…Good thing I ignored that impulse. They just happened to stop off at a nearby drugstore and were still close so it wasn’t a big deal to swing back around.
Silly me. Lucky me!
Now to today (which by now is yesterday!).
This morning I woke up at 3am wide awake and it took a long time to wind down. Then as I was dozing back off at about 4, Charlotte decided to wake up. And I mean with vigor! She started talking and singing loudly, very clearly and very wide awake, and as soon as she realized I was awake, she just HAD to be in my bed. So over she came. Fortunately, she fell back asleep sometime around 6 (not sure because I dozed too) and slept in until almost 10!
She had about as lazy a day as ever while I puttered around doing laundry (did the sheets, pillowcases, etc…as well), playing online and cleaning the room. I figured we need to straighten things up and clean for when CJ’s counts plummet which they’re supposed to. Back to germophobe 101.
One of the better events of the day, as usual, was poop. Three sizable poops to be exact and every time, she turned into a different Charlotte, a little bit happier each time. Quite honestly, I can’t say where it all came from. It didn’t seem she had eaten enough to account for all of it but I’ll take it.
Another thing she’s been doing is taking my running shoes (it HAS to be the running shoes) and pulling out the shoelaces. She plays around with it for a while and then re-laces the shoes, CJ style. This activity has taken up HOURS of her time the past week. It’s good for her fine motor skills, keeps her in one place, I don’t mind wearing one shoe at a time around the lobby.
The one not so good development I’ve noticed is that she has gotten stiffer in her legs and although I’ve been stretching and massaging them, she needs a real PT/massage therapist to work on her. I’ll check into that tomorrow.
Speaking of tomorrow…The past 3-4 days have been days I'll never forget for as long as I live. I didn't think I could bond with Charlotte any more than we already had but especially today, it has been filling me up. We’ve been doing very little, actually, but the whole “vibe” today has been next to magical. Just little things like honking noses, following each other aimlessly around the lobby, her telling me over and over, the subplots in her Dora and Blue's Clues videos, etc…
There's a certain bitter-sweet quality to it and the last part of the movie "A.I. Artificial Intelligence" keeps intruding into my thoughts, the part where the androids bring the “mother” back to life for one day so the “son” can see her again and have that one perfect day and, of course, nobody in the audience wants it to end.
These have been her last few "good" days before starting up the proton radiation/chemo and I can’t help but dread the inevitable downward spiral (which, by the way, is becoming her favorite shape. How deep is that?) waiting for us as treatment, and the family fun side effects, begin to take their toll. I’m so appreciative of having these special days with Charlotte. I’m sorry Rachel wasn’t here for them since she will be coming back after the treatments begin and will have to deal with the “sunburn,” the chemo, the oh-so-fun temozolomide (there are chocolate bars in the bin in the fridge) pretty much as soon as she steps off the plane.
I just want to hold her and kiss her all the time (I think she’s getting irritated with the kissing part). It’s 1:30am and I don’t want to go to sleep, even though we have to get up super early to eat something before she goes NPO at 5:30am, because she’s over there less than three feet away from me sleeping like a little angel and I can’t get enough of her.
Fortunately, there will be support here for us during the most trying times as Grandpa and Grandma Bonita are headed this way and the New Mexico contingent will be here the 8th of August. We are also developing quite the Houston based network of people who know people following Charlotte’s progress.
The letters and packages are starting to come in. Thanks to all for those.
Now for something COMPLETELY different! I NEVER do these sorts of things on Facebook (surveys, quizzes, junk like that, especially where you’re supposed to tag people to do the same quiz or whatever). I really LOATH doing those, but one finally caught my interest. It’s the “put your ipod on shuffle and make a list of the first 15 songs that come up” game. Now, I had seen this before and I was like, “Whatever.” But local Richmond musician, Desiree Roots did it and sent her list to me. Her list was so cool, I figured she'd appreciate mine. I didn’t “tag” anyone or anything like that. I just put there for her and all to see. And it came out very cool! Here’s what came up…
1) Bills, Bills, Bills - Jonathan Coulton
2) London Bridge Is Falling Down - Romp n' Roll training songs
3) Union House Branch - Allison Krauss & Union Station
4) Digging In The Dirt (Live Version) - Peter Gabriel
5) Southern Soldier Boy - Southern Horizon Civil War Band
6) Simplicate - Upper Left Trio
7) On Your Way Down - Little Feat
8) Happy Trails - Veggie Tales
9) Hold On - Yes
10) Bangs - They Might Be Giants
11) Story Of Little Boy - Tommy Emmanuel (story, not a song)
12) At The Still Point - The Story
13) A Token Of My Extreme - Frank Zappa
14) In A Silent Way (DJ Cam Remix) - Miles Davis
15) Come Over To My House And Play - Veggie Tales
16) Speak Low - Dianne Reeves (bonus due to 11 not being an actual song)
So we step into the next part of the journey in just a few hours. I can't tell you how much we appreciate all the thoughts, prayers, beams of gold and silver light, etc...sent our way. We certainly don't feel alone.
Showing posts with label Megan Blake. Show all posts
Showing posts with label Megan Blake. Show all posts
Tuesday, July 21, 2009
Sunday, June 7, 2009
Damn, she's adorable!
Wow! What a day yesterday. As usual, our friends and family get here and we immediately make them work. Amy was no exception. She got here Friday morning and was watching Charlotte almost before she got her luggage.
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Yesterday morning, both Rachel and I were running around like proverbial chickens getting ready for classes at Romp n' Roll (Rachel) and the Ashland Strawberry Faire (me) so Amy was on duty early. It definately helps that Charlotte, who had never met Aunt Amy, seems to love her to death.
For the sake of plot development, I need to wander off track for a bit.
The weather the last few days has been rainy to say the least. We had a couple of thunderstorms that were worthy of the Illinois storms I remember from when I was little. Samantha, Emily, and I, along with a "grownup" member were stuck in Romp n' Roll Wednesday while the heavens open up. The wind was blowing, the trees were boogying (sp?), the rain was going sideways, and, to our amazement, a Target shopping cart got loose and was slowly being pushed around the parking lot area in front of our door. It was moving in an almost nonchalant manner, as if the ghost taking its purchases to the car (ghost train?) could care less about the weather (I guess they wouldn't, would they?).
When the cart passed the front of RNR, we were amused and then got distracted by the hope that there wasn't a tornado setting down in the parking lot. When, a few minutes later, the cart passed by again, going the other direction, in the same nonchalant manner, then it started getting bizarre. Maybe the ghost forgot where it parked the ghost train.
This poor, indecisive cart passed by our front door no less than four times! We never saw it turn around and the fact that it did kept us nervous about tornados.
We also had some ceiling tile casualties in the back right next to the garage door. If it's not a leak, it's probably rain that got blown up under the awning and got in via the top of the garage door. But MAN! did it rain!
It kept raining and spitting and threatening to rain and didn't stop until Saturday morning. I was telling everyone how nice it was going to be for the Strawberry Faire during my Friday classes but it was hard to convince people with the gloomy weather right outside the window.
Which conveniently brings me back to my original story (How 'bout DAT fer a Segway?! Hemingway, eachyer heart out, eh?!).
I couldn't set up the tent and tables for our booth at the Strawberry Faire until Saturday morning since it was still drizzeling off and on so I had to get up extra early and head over. Good thing we only live 1 mile away. :-)
Everything got set up with a minimum amount of drama and the Ashland Jaycees helped a great deal Their booth was next to ours and they always have someone willing to help out. When scheduling made me leave early and there was no place to put our stuff, they didn't hesitate a second. The Flanagans, fellow founders of the chapter, stepped right up and all our junk is sitting in their family room (guess I need to pick that up sometime today).
Charlotte (oh...right...this is supposed to be about her, isn't it?) and Aunt Amy walked down to the faire and talk about an attention hog! Amy said she had trouble actually getting TO the faire what with all the people recognizing CJ and stopping them to see the little princess. It didn't hurt that she was wearing a NEW red "Bald Chicks Rock" that Megan Blake's mother made for her (I told her she could get a cottage industry going with those) and her yellow wide brimmed hat "with the bow in the front!" Of course, Amy doesn't know any of these people and they keep coming up and talking to CJ like they know her which they probably do. Amy was a champ and resisted the urge to tell everyone, "Stay away from my child!" Very funny.
In the end, they did get to the faire and Charlotte walked all over the place and saw lots of friends, teachers, and RNR members all morning. I bought a slab o' strawberries (who didn't?) and we schlurped on them all day. CJ had developed the habit of only eating the skin of strawberries. Not sure why. But I encouraged her to take a big bite of these strawberries and once she did, there was no stopping her!
Another side note: I'm not fond of strawberries. Never really have been. I know they're really good for you and I can tolerate them without gagging but I never reach for a strawberry if I've got the munchies. Not like blueberries. (Mmmmm...blueberries...oohhhh!) But the strawberries they had at the Ashland Strawberry Faire yesterday might have changed my mind. Wherever they were from, Hanover or California, I don't care. They were sweet through and through and I think I ate a couple of little baskets by myself. Never in my life have I had a taste turnaround like that (except maybe with cottage cheese but that's another story).
Charlotte ate a bunch too.
Amy finally took her home after a good long while and when I got back to get ready for my Southern Horizon gig at Cold Harbor, Charlotte was presiding over a tea party with Amy, Rachel, and Uncle Kolbey. I got suckered into sitting down for a little bit too.
Damn, she's adorable!
The result was that Charlotte had a great day as did Romp n' Roll, the Greater Ashland Jaycees, 30,000 Ashland Strawberry Faire guests, and all those folks at Cold Harbor who got to see that incredible sunset followed by an amazing moonrise! (I haven't even heard about Kids Night Out yet!)
Today, Charlotte and I will be headed to her boyfriend Wyatt's 4th Birthday party. That can only mean that Charlotte's is right around the corner!
Hope this post hasn't strained your eyes too much.
Rog
p.s. I have added a new skill set to my resume...FACE PAINTING! I've never done it before and I was expecting someone else to do it yesterday but as fate would have it, I was the one available when someone asked for it. I'm attaching a little example of my new skill! :-P
Friday, April 17, 2009
It was a Decent Night
It was a decent night. Charlotte is still spiking a fever and the Tylenol seems to keep it "artificially" at bay for a while. Then it goes up again. It's been as high as 103! She also keeps complaining that her "bum bum" is hurting and the area is very red. Nurse Nicky made up some special "booty paste" that is even better than the sensicare cream and that seems to help a little. My guess is a UTI but they're waiting on cultures to come back. Also, her latest blood counts were even lower. I guess yesterday, they were low but not quite low enough for platelet or blood transfusion. Today they were VERY low so she is getting a blood transfusion right now. She slept ok considering all of this and I got a few hours of shut-eye too. Now she's watching Sesame Street and drinking some water. Yay!
At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!
I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.
It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!
I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!
Well, my tummy is grumbling so I need to round up some breakfast...
Rachel
Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:
She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.
She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.
Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.
Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.
She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.
So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.
A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.
Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!
That's all I have to say for now.
Rachel
It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.
Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.
One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.
Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.
So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).
Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!
Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.
zzzzzzzzZZZZZZZzzzzzzzzz!!!
At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!
I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.
It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!
I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!
Well, my tummy is grumbling so I need to round up some breakfast...
Rachel
Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:
She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.
She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.
Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.
Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.
She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.
So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.
A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.
Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!
That's all I have to say for now.
Rachel
It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.
Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.
One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.
Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.
So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).
Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!
Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.
zzzzzzzzZZZZZZZzzzzzzzzz!!!
Friday, April 3, 2009
Catheter removed, MRI Showed no Growth, & Charlotte Sleeping Peacefully
How about West Xylophone?
CJ had the catheter removed this morning, an MRI which showed no growth (YAY!), and at last message from Rachel was sleeping peacefully.
She was extremely clingy this morning and I just sat on the couch with her for about a half hour while mommy got things packed and ready. She pretty much knew what was happening and didn't want to let go. I talked to her and told her that nasty catheter was coming out and they were going to take a picture of her brain and all of that was good and relatively painless. She seemed reassured. She asked me where I was going to be and I told her at Romp n' Roll and she seemed ok with it. I sang to her a little and then put her in the car with Mommy and Granny. I have a much better feeling about things now than I did a day or so ago.
Some dads from the Yahoo Dads group are here at Romp n' Roll playing around and we'll just keep it going for the rest of the day so there's lots of fun to be had.
Rachel didn't take the laptop so I'm the point person for CB updates. Granny will be staying at the hospital tonight. Mommy and Daddy are going to just stay home, drink wine, and maybe get some rest.
Major cool event during babies class today: got to see Isabelle crawl! She just started this week. We were all very excited. We also welcomed yet another set of twins (girls: Ashley and Amber) to Babies!
Also wonderful to see Megan Blake, Katie, and Katie's Grandma at Tumble Tunes this morning. Everyone seems to be doing a little better. LOVED the scarf and they gave CJ a t-shirt that reads, "Bald Chicks Rock!" Megan has a matching one, I hear. Thanks Grandma (she made them).
Gonna scrounge up lunch.
Come in and play!
Rog
CJ had the catheter removed this morning, an MRI which showed no growth (YAY!), and at last message from Rachel was sleeping peacefully.
She was extremely clingy this morning and I just sat on the couch with her for about a half hour while mommy got things packed and ready. She pretty much knew what was happening and didn't want to let go. I talked to her and told her that nasty catheter was coming out and they were going to take a picture of her brain and all of that was good and relatively painless. She seemed reassured. She asked me where I was going to be and I told her at Romp n' Roll and she seemed ok with it. I sang to her a little and then put her in the car with Mommy and Granny. I have a much better feeling about things now than I did a day or so ago.
Some dads from the Yahoo Dads group are here at Romp n' Roll playing around and we'll just keep it going for the rest of the day so there's lots of fun to be had.
Rachel didn't take the laptop so I'm the point person for CB updates. Granny will be staying at the hospital tonight. Mommy and Daddy are going to just stay home, drink wine, and maybe get some rest.
Major cool event during babies class today: got to see Isabelle crawl! She just started this week. We were all very excited. We also welcomed yet another set of twins (girls: Ashley and Amber) to Babies!
Also wonderful to see Megan Blake, Katie, and Katie's Grandma at Tumble Tunes this morning. Everyone seems to be doing a little better. LOVED the scarf and they gave CJ a t-shirt that reads, "Bald Chicks Rock!" Megan has a matching one, I hear. Thanks Grandma (she made them).
Gonna scrounge up lunch.
Come in and play!
Rog
Friday, March 27, 2009
March 27th, Dad's Birthday
OK, so I'm doomed to lose at least one post per week. Let's try it again.
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
http://www.youtube.com/results?search_type=&search_query=uptown+vocal+jazz&aq=f
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
http://www.caringbridge.org/visit/meganblake
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)
It's March 27th. Dad's Birthday. Happy Birthday! CJ has a little something coming to you in the mail.
I was saying that every good day that Charlotte has is such a gift. I have really come to appreciate every day as it comes especially knowing what's coming up next week.
Today she took a couple walks with the grandparents before the rain moved in and then ran up and down the hallway at Uncle Koldey's house like a wild child.
In a great example of just what we're willing to do for our little princess, at dinner tonight, Charlotte was shoveling in dinner and came up to the broccoli and cheddar on her plate. She wanted to eat the broccoli but not the cheese. So Gramps gathered up all the broccoli, rinsed it off and delivered it back for her to eat, which she did. And not only did he rinse off the broccoli, he did it twice.
For those who were wondering, the Youtube videos of the Uptown Vocal Jazz Quartet are back up and now all 6 are there. Here's the link to the search page:
http://www.youtube.com/results?search_type=&search_query=uptown+vocal+jazz&aq=f
Please remember Megan Blake as you send out the positive vibes. She had her second round of chemo this week. Katie came to RNR and was her usual adorable self.
http://www.caringbridge.org/visit/meganblake
Off to West Virginia tomorrow for a date with Southern Horizon. Taking the new guitar. Thanks Aunt B and Uncle Not-So-Hairy.
Gramps is already doing yard work so for those wanting to help with that, you'd better get over here and tie him down or there won't be anything left to do. Good thing it's raining. :-)
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