What can we say about January 7, 2010 that hasn't already been said? Not much. Doesn't make us think about it any less. Doesn't lighten the load of remembering. Doesn't convince the bus driver to go park somewhere else. It still pretty much sucks.
So what I'd like to do on this third anniversary of Charlotte Jennie's metamorphosis is to offer you music that reminds me (Daddy) of her.
The Great Remember from the CD Rare Bird Alert is the latest tune that has her spirit all over it. The moment I saw this video of Steve Martin playing his original clawhammer banjo composition during his tour with the Steep Canyon Rangers, I thought of her. It has a beautiful, yearning melody and yet there are still wonderful elements of Martin's humor as he tunes before he plays.
Radiance is a vocal version of a Keith Jarrett improvisation recorded by Julia Dollison and Kerry Marsh. I believe Kerry's sister put together the video slide show. It's heartbreakingly beautiful and very difficult for me to watch.
Charlotte certainly loved Dora The Explorer. She learned several Spanish words and phrases watching Dora and after her first surgery, when she started being able to speak, she counted to 10 in Spanish for us. It meant an awful lot to hear her do that.
The Chanticleer version of Franz Biebl's Ave Maria is another heartbreakingly beautiful piece and I can't hear it without thinking about Charlotte and becoming a blubbering mess. (The link comes complete with fireplace)
I believe someone introduced us to "Two Thumbs Up" by Johnny Bregar after Charlotte died or near thereabouts. It has become one of our official theme songs and Johnny has been tremendously generous to give us permission to do pretty much whatever we want with his recording. We promise not to abuse that trust.
Here's another song that someone sent to us after Jan 7, 2010. It's Jonatha Brooke's version of Woody Guthrie's, "New Star." The lyrics are actually fairly odd but it came to us at the right time and now it has all kinds of meaning Woody never intended, I'm sure.
Of course, you didn't think I was going to leave out the Disney angle, did you? Let's start with the last movie Charlotte saw in a theater, The Princess and the Frog. There isn't a tune on the soundtrack that DOESN'T make me think of Charlotte and there was a time when I would obsessively listen to it every morning when opening up at Romp n' Roll (much to the chagrin, I'm sure, of the rest of the staff); however, I will include my favorite song from the movie, "Gonna Take You There."
How about some Little Mermaid? "Part of Your World" seems so ubiquitous; so completely over played but it's a Charlotte song so I don't think I will ever get tired of it.
Next comes Mary Poppins. I don't remember exactly when this movie became one of Charlotte's favorites but all of a sudden, it was all she wanted to watch. So here's "Let's Go Fly A Kite" which has become one of our unofficial theme songs.
Last but not least by any stretch of the imagination, here's Charlotte's favorite version of Charlotte's favorite song, Frosty The Snowman by Dan Tyminsky. We actually have a video of Charlotte dancing and sort of doing karaoke to this song. We also have video of several former NFL players singing this to her on her birthday on July 9, 2009 in the the Nelson Clinic at Children's Hospital of Richmond. THAT was something to see! Waddya know? You can! Here!
I'm sure I've left off dozens of songs and I'll probably be adding a tune here and there for days. Please feel free to add your own song if it reminds you of CJ.
Today, we invite you to have a chocolate milk toast in honor of Charlotte and if you'd like, eat some "dadoo" (Cheerios or "round cereal") and mac n' cheese.
We love you so very much, Monkey Butt and miss you every day.
Showing posts with label Disney. Show all posts
Showing posts with label Disney. Show all posts
Monday, January 7, 2013
Thursday, June 3, 2010
Mood Swings and The Double Marathon Challenge
Roger here,
Our trip to Colorado was really wonderful and I can't tell you how great it was to see my beautiful niece, Cerisa, walking down the aisle all grownup and stuff. She's a married woman now. Congrats C-Weed! It was an honor to sing at your wedding.
There were some very bittersweet parts, though for obvious reasons. CJ should have been there.
Coming back to Virginia was actually kind of tough on me for some reason and I'm still not completely over it. I've had quite a few "moments" the past few days and it's been harder than usual to think about Charlotte and what she had to go through. Tuesday was the worst day I've had in a long while. It all started when I was looking for a template of the CJSTUF letterhead and came across the letter I wrote to Disney. It was all downhill from there. I was loosing it at the drop of a hat and really feeling a distinct lack of self control. I had to sit in my car in front of Romp n' Roll for a few minutes and let it all out of my system before going in (probably feeling a little sorry for myself, I must confess).
The strange thing is, the moment I walked into Romp n' Roll, I started feeling better. Rachel was teaching my Babies! class because I had to come in late and it was so nice to see everyone laughing and playing. All the positive energy really bolstered me.
Another thing that doesn't help is that it popped into my head how we used to gauge Charlotte's pain level. The scale of 1-10 and the happy-to-sad face graph really didn't work for her but she would respond pretty accurately when we asked her if her pain level was "a little" (thumb and forefinger apart), "a lot" (hands spread several inches apart), or "alotalot" (hands spread wide apart). I so hate the fact that we had to use that system. Any system at all for that matter.
I've had a few more ups and downs since then but nothing like Tuesday. I'm sure it's just my every six month meltdown that comes about once a month or so now. I'm sure getting back into running will help that.
Hey I think I smell a segue!
Some of you may have heard about my "Double Marathon Challenge" (or "Double Marathon Madness" as Rachel calls it) where I will be running the Chicago Marathon in October and then the Richmond Marathon in November all to raise funds for CJSTUF. Well, training begins on Saturday! How would YOU like to be involved?
We'll need TEAM CJ members for spirit groups along the routes of both marathons and if anyone else wants to run in any of the races (there's also the McDonalds 1/2 Marathon, HCAVA 8K, and a Kids Fun Run in Richmond), let us know. Anyone raising $1,000 or more will get registration fees reimbursed!
I'm tweeking the pledge form to include a few extra choices. (More on that later but think "VT vs UM!")
It's a three day a week program that worked very well for me a couple of Richmond Marathons ago. Anyone is invited to come running with me. I will be running every Tuesday, Thursday, and Saturday morning bright and early Starting at 7am. Short runs to start off adding mileage as time goes by.
If anyone isn't part of an official training team, feel free to come out and mosey a while with me. I might be going slow but at least I'll be going.
I would love for some Richmonders to come with us up to Chicago and/or Chicagoans to come down to Richmond for the respective races. It'll be a heck of a party in both cities!
Did I mention my goal is $10,000? I really have no fear that we won't reach it.
Here's a great idea that I'm shamelessly stealing: PLEDGEWARS! I think most of you know that Rachel and I are both graduates of the University of Miami and when I'm not bleeding orange and blue for the Denver Broncos or green and yellow for the Packers, I'm mixing them and bleeding orange and green for the "U." For some strange reason, I have run into a certain amount of resistance from people in this part of the country; especially from those turkeys in Blacksburg. Well, to be fair, I want to give all you Virginia Tech fans the chance to show me who's boss, I'm throwing down the gauntlet. If VT fans raise more money than UM fans then during the Richmond Marathon, I will wear either a turkey outfit or neck-to-toe, including socks and underwear, Virginia Tech garb (I shudder at the thought!). The hat will be a pink or purple Charlotte hat no matter which side wins.
C'mon Canes! You must save me from this fate. We will be keeping a running tally going and we'll have to see what colors I wear on November 13th! Stay tuned.
Here's a GREAT memory we have of Charlotte: When we would say, "We've got some Canes over here," we taught Charlotte to say "Whoosh! Whoosh!" If that's not inspiration for you, I don't know what is.
Last but not least, Coco's Chocolate Dream Chocolatiers, the company letting us use "Chocolate Makes Everything Better," has begun making butterfly chocolates! I don't think I ever told her about the butterfly connection. Please go to her website and thank them or just say hi from a CJ fan. If anyone wants to do a "Chocolate Stand" as a FUN-raiser, let me know and we'll get it set up.
Thanks for letting me rant. I'll keep searching.
Our trip to Colorado was really wonderful and I can't tell you how great it was to see my beautiful niece, Cerisa, walking down the aisle all grownup and stuff. She's a married woman now. Congrats C-Weed! It was an honor to sing at your wedding.
There were some very bittersweet parts, though for obvious reasons. CJ should have been there.
Coming back to Virginia was actually kind of tough on me for some reason and I'm still not completely over it. I've had quite a few "moments" the past few days and it's been harder than usual to think about Charlotte and what she had to go through. Tuesday was the worst day I've had in a long while. It all started when I was looking for a template of the CJSTUF letterhead and came across the letter I wrote to Disney. It was all downhill from there. I was loosing it at the drop of a hat and really feeling a distinct lack of self control. I had to sit in my car in front of Romp n' Roll for a few minutes and let it all out of my system before going in (probably feeling a little sorry for myself, I must confess).
The strange thing is, the moment I walked into Romp n' Roll, I started feeling better. Rachel was teaching my Babies! class because I had to come in late and it was so nice to see everyone laughing and playing. All the positive energy really bolstered me.
Another thing that doesn't help is that it popped into my head how we used to gauge Charlotte's pain level. The scale of 1-10 and the happy-to-sad face graph really didn't work for her but she would respond pretty accurately when we asked her if her pain level was "a little" (thumb and forefinger apart), "a lot" (hands spread several inches apart), or "alotalot" (hands spread wide apart). I so hate the fact that we had to use that system. Any system at all for that matter.
I've had a few more ups and downs since then but nothing like Tuesday. I'm sure it's just my every six month meltdown that comes about once a month or so now. I'm sure getting back into running will help that.
Hey I think I smell a segue!
Some of you may have heard about my "Double Marathon Challenge" (or "Double Marathon Madness" as Rachel calls it) where I will be running the Chicago Marathon in October and then the Richmond Marathon in November all to raise funds for CJSTUF. Well, training begins on Saturday! How would YOU like to be involved?
We'll need TEAM CJ members for spirit groups along the routes of both marathons and if anyone else wants to run in any of the races (there's also the McDonalds 1/2 Marathon, HCAVA 8K, and a Kids Fun Run in Richmond), let us know. Anyone raising $1,000 or more will get registration fees reimbursed!
I'm tweeking the pledge form to include a few extra choices. (More on that later but think "VT vs UM!")
It's a three day a week program that worked very well for me a couple of Richmond Marathons ago. Anyone is invited to come running with me. I will be running every Tuesday, Thursday, and Saturday morning bright and early Starting at 7am. Short runs to start off adding mileage as time goes by.
If anyone isn't part of an official training team, feel free to come out and mosey a while with me. I might be going slow but at least I'll be going.
I would love for some Richmonders to come with us up to Chicago and/or Chicagoans to come down to Richmond for the respective races. It'll be a heck of a party in both cities!
Did I mention my goal is $10,000? I really have no fear that we won't reach it.
Here's a great idea that I'm shamelessly stealing: PLEDGEWARS! I think most of you know that Rachel and I are both graduates of the University of Miami and when I'm not bleeding orange and blue for the Denver Broncos or green and yellow for the Packers, I'm mixing them and bleeding orange and green for the "U." For some strange reason, I have run into a certain amount of resistance from people in this part of the country; especially from those turkeys in Blacksburg. Well, to be fair, I want to give all you Virginia Tech fans the chance to show me who's boss, I'm throwing down the gauntlet. If VT fans raise more money than UM fans then during the Richmond Marathon, I will wear either a turkey outfit or neck-to-toe, including socks and underwear, Virginia Tech garb (I shudder at the thought!). The hat will be a pink or purple Charlotte hat no matter which side wins.
C'mon Canes! You must save me from this fate. We will be keeping a running tally going and we'll have to see what colors I wear on November 13th! Stay tuned.
Here's a GREAT memory we have of Charlotte: When we would say, "We've got some Canes over here," we taught Charlotte to say "Whoosh! Whoosh!" If that's not inspiration for you, I don't know what is.
Last but not least, Coco's Chocolate Dream Chocolatiers, the company letting us use "Chocolate Makes Everything Better," has begun making butterfly chocolates! I don't think I ever told her about the butterfly connection. Please go to her website and thank them or just say hi from a CJ fan. If anyone wants to do a "Chocolate Stand" as a FUN-raiser, let me know and we'll get it set up.
Thanks for letting me rant. I'll keep searching.
Tuesday, December 8, 2009
Animal Kingdom
Yesterday was our final day at GKTW. We checked out of our Villa and got the car all packed. We have a whole suitcase full of gifts from GKTW as well as a few souvenirs. Good thing one of her daily gifts at GKTW was a GKTW duffel bag! Before we checked out, we got to meet Leah. She is one of the event coordinators at GKTW and her dad is pastor at the church in Pierson where my stepdad (John) helps out from time to time. Small world, eh?
One of the coolest things about our checkout process was that they give us this passport. We have a full year to visit places all over the country that participate in the GKTW program. We can go to places like Hershey Park, Kings Dominion, Hyland Hills Water World, etc. for FREE with usually a week or two notice. What a great thing. At some point, I will list all the corporate sponsors and companies that make places like GKTW possible. These are businesses doing great things for families in need and they deserve your business!
After we said goodbye to GKTW, we headed over to Animal Kingdom. Again, we got the primo parking. We made our way into the park and headed off to the safari ride. Got to see lots of animals from crocs to hippos to lions. We then went on the Rafiki train ride and over at the Conservation Station we met Rafiki and Jiminy Cricket. Another great example of how Disney employees treat the Make-A-Wish families: as we were coming in to the Conservation Station, we saw Rafiki doing his meet and greet. We went up to see him and Rafiki's "assistant" told us that he was about to take a break and would be back in about 5 minutes. No problem. We were totally cool with that. Rafiki, however, had other ideas. He saw CJ (and probably Roger's Make-A-Wish tee) and stopped to greet her and take a few pictures. We got nice hugs from him too.
Later, when we went to see Jiminy Cricket, we pulled up to stand in line. It wasn't a very long line (maybe about 3-4 families) so we just pulled into the queue. One of the assistants looks over at us and says, "You know that you don't get in line. Come on over here!" And with that, we were bumped to the front. It was funny!
During the morning, Charlotte was very low key. She didn't really perk up and was very quiet. Roger and I weren't really feeling all that great either so it was kind of a rough morning. Things got better after lunch, though. We ate at the Yak and Yeti which was a Pan-Asian restaurant with cool Hindu decor. You felt like you were in a lodge in the mountains of India or Pakistan. Roger had a great meal of pan-seared miso salmon with rice and veggies. I had fried green beans with a chili-plum sauce and pan seared pork wontons with a lime soy sauce. Both were yummy!
After lunch, CJ seemed to perk up a bit and became much more talkative. We headed over to the Finding Nemo Musical show and we were AMAZED! First of all, we totally beat the crowds with our access pass. The musical was great and we were all entranced. They use puppets and live singers a la The Lion King musical. I think that was the highlight of everyone's day. CJ laughed at the funny parts and was entranced by the music.
From there, we went to see the 3-D bug movie (from A Bug's Life) and then found our stations for the parade. The parade at Animal Kingdom was not as interactive as the Magic Kingdom parade but there were great animal costumes, floats, and some of our favorite characters. From there, we left the park and drove to Daytona Beach. We had dinner with my mom and got settled in our condo. We are staying in one of my godmother's condominium units and it's GORGEOUS. 2nd floor...right on the ocean. I had forgotten how calming the sound of the ocean can be. We have had a nice night of rest and we have been enjoying the morning. Roger's dad drove down to spend a few days with us and we are planning to take the next few days VERY easily.
Roger noted yesterday that the extra steroid seemed to help with the tremors. We are already noticing those effects wearing off, though. The tremors seem to be coming back and we are debating the advantages of increasing the steroid versus letting things progress. May need to consult with the docs before the trip is over.
Before I sign off, one final plug for an event in the Richmond area:
The Mechanicsville Moms are holding a used book sale at Romp n' Roll-VCM tomorrow (12/10) from 3-7 PM. There will be books available for all ages. Please stop by. All funds raised will go towards CJSTUF.
Also, the CJSTUF website is LIVE. Go there and check it out. Huge thanks to Ruth and Jay Campbell who have worked so diligently to get this going for us. It looks great! There is an events calendar where we will post upcoming events of all kinds. There is also a "read with CJ" calendar. If you are one of the many who would like to read with CJ, please fill out the form (on the Contact Us link) and we will get back to you about dates and times. We will officially start that upon our return from Florida (on or about 12/16). You will also be able to read the blog and connect through Facebook via the website. More changes to come but this is a wonderful start.
One of the coolest things about our checkout process was that they give us this passport. We have a full year to visit places all over the country that participate in the GKTW program. We can go to places like Hershey Park, Kings Dominion, Hyland Hills Water World, etc. for FREE with usually a week or two notice. What a great thing. At some point, I will list all the corporate sponsors and companies that make places like GKTW possible. These are businesses doing great things for families in need and they deserve your business!
After we said goodbye to GKTW, we headed over to Animal Kingdom. Again, we got the primo parking. We made our way into the park and headed off to the safari ride. Got to see lots of animals from crocs to hippos to lions. We then went on the Rafiki train ride and over at the Conservation Station we met Rafiki and Jiminy Cricket. Another great example of how Disney employees treat the Make-A-Wish families: as we were coming in to the Conservation Station, we saw Rafiki doing his meet and greet. We went up to see him and Rafiki's "assistant" told us that he was about to take a break and would be back in about 5 minutes. No problem. We were totally cool with that. Rafiki, however, had other ideas. He saw CJ (and probably Roger's Make-A-Wish tee) and stopped to greet her and take a few pictures. We got nice hugs from him too.
Later, when we went to see Jiminy Cricket, we pulled up to stand in line. It wasn't a very long line (maybe about 3-4 families) so we just pulled into the queue. One of the assistants looks over at us and says, "You know that you don't get in line. Come on over here!" And with that, we were bumped to the front. It was funny!
During the morning, Charlotte was very low key. She didn't really perk up and was very quiet. Roger and I weren't really feeling all that great either so it was kind of a rough morning. Things got better after lunch, though. We ate at the Yak and Yeti which was a Pan-Asian restaurant with cool Hindu decor. You felt like you were in a lodge in the mountains of India or Pakistan. Roger had a great meal of pan-seared miso salmon with rice and veggies. I had fried green beans with a chili-plum sauce and pan seared pork wontons with a lime soy sauce. Both were yummy!
After lunch, CJ seemed to perk up a bit and became much more talkative. We headed over to the Finding Nemo Musical show and we were AMAZED! First of all, we totally beat the crowds with our access pass. The musical was great and we were all entranced. They use puppets and live singers a la The Lion King musical. I think that was the highlight of everyone's day. CJ laughed at the funny parts and was entranced by the music.
From there, we went to see the 3-D bug movie (from A Bug's Life) and then found our stations for the parade. The parade at Animal Kingdom was not as interactive as the Magic Kingdom parade but there were great animal costumes, floats, and some of our favorite characters. From there, we left the park and drove to Daytona Beach. We had dinner with my mom and got settled in our condo. We are staying in one of my godmother's condominium units and it's GORGEOUS. 2nd floor...right on the ocean. I had forgotten how calming the sound of the ocean can be. We have had a nice night of rest and we have been enjoying the morning. Roger's dad drove down to spend a few days with us and we are planning to take the next few days VERY easily.
Roger noted yesterday that the extra steroid seemed to help with the tremors. We are already noticing those effects wearing off, though. The tremors seem to be coming back and we are debating the advantages of increasing the steroid versus letting things progress. May need to consult with the docs before the trip is over.
Before I sign off, one final plug for an event in the Richmond area:
The Mechanicsville Moms are holding a used book sale at Romp n' Roll-VCM tomorrow (12/10) from 3-7 PM. There will be books available for all ages. Please stop by. All funds raised will go towards CJSTUF.
Also, the CJSTUF website is LIVE. Go there and check it out. Huge thanks to Ruth and Jay Campbell who have worked so diligently to get this going for us. It looks great! There is an events calendar where we will post upcoming events of all kinds. There is also a "read with CJ" calendar. If you are one of the many who would like to read with CJ, please fill out the form (on the Contact Us link) and we will get back to you about dates and times. We will officially start that upon our return from Florida (on or about 12/16). You will also be able to read the blog and connect through Facebook via the website. More changes to come but this is a wonderful start.
Saturday, December 5, 2009
Three Days Worth of News...Long Post Ahead!
First of all, Beth has sent us a link to the pictures she took on our first day at the Magic Kingdom. Enjoy! Again, we are so grateful that she came to Disney with us and shared her time and talent. Thanks also to a whole host of people who helped her with accommodations, airfare, etc.
Now to pick up where we left off:
Charlotte slept until about 7 PM Wednesday night. We woke her up because we didn’t want her sleeping till 10 or 11 and then being up all night. Our plan was thwarted anyway. She was awake until 5 AM. Yes, you read that correctly. 5 AM! She just kept eating, watching movies, reading books. And NOT falling asleep. Roger and I took turns staying up with her but neither one of us really got much sleep. We finally decided to take her for a drive and she was out less than a mile down the road. Looks like we are back to resorting to infant sleep strategies.
Anyway, we decided to let her sleep and Roger and I went back to bed as well for a bit. My cousin Sarah, her husband John and their almost 3 year old daughter Tricia were on their way to join us for a day of fun at the Magic Kingdom so we diverted them away from the park and towards GKTW. We showed them around the resort and Tricia got to check out the Candy Land playground while Charlotte and Roger slept. Tricia had never met Charlotte (or CJ as she calls her) but it was so cute that from the moment she got to the resort she kept saying “Go see CJ? Where CJ?”
Charlotte slept until about 7 PM Wednesday night. We woke her up because we didn’t want her sleeping till 10 or 11 and then being up all night. Our plan was thwarted anyway. She was awake until 5 AM. Yes, you read that correctly. 5 AM! She just kept eating, watching movies, reading books. And NOT falling asleep. Roger and I took turns staying up with her but neither one of us really got much sleep. We finally decided to take her for a drive and she was out less than a mile down the road. Looks like we are back to resorting to infant sleep strategies.
Anyway, we decided to let her sleep and Roger and I went back to bed as well for a bit. My cousin Sarah, her husband John and their almost 3 year old daughter Tricia were on their way to join us for a day of fun at the Magic Kingdom so we diverted them away from the park and towards GKTW. We showed them around the resort and Tricia got to check out the Candy Land playground while Charlotte and Roger slept. Tricia had never met Charlotte (or CJ as she calls her) but it was so cute that from the moment she got to the resort she kept saying “Go see CJ? Where CJ?”
Charlotte got up about 10. We grabbed some breakfast/brunch and finally headed off to the park. We piled into one vehicle to save on parking. I think we made it into the park right before noon. The plan was pretty much a re-do of the day before. We went back to Mickey’s Toon Town Fair to see Mickey, Minnie, and the Fairies. This time, Tricia joined us in the experience. Yet again, we got great “star treatment” with our access pass. I think the park may have been even busier on Thursday and it was good not to have to wait HOURS to see the characters. When we went back to see the fairies, Rosetta was the same cast member as the day before, and as soon as Charlotte walked in, she said “Charlotte! You came back to see us again!” It was so great. This time I caught the whole experience on video and will post that soon on our new YouTube site (links will be provided). Her visit with the Fairies was still, I think, the highlight of the trip.
We got some lunch and then headed over to Fantasyland again. We repeated a few rides from the day before (Winnie the Pooh, Dumbo), tried a few new rides that we missed the day before (the 3-D movie Philharmagic which CJ LOVED), and we met Tigger, Pooh, Eeyore, and Peter Pan.
At this point, we headed towards Adventureland so we could scope out a good spot for the parade. We found a good “accessible” point and then Roger and CJ kind of camped out while we kept Tricia busy browsing Adventureland and getting ice cream.
The parade was fun and fabulous. Because of our great seat, many of the “walking” characters (those not on floats) came up to Charlotte and greeted her personally. She really loved seeing Stitch and waved at many of the other characters. Ariel even noticed (way up on top of her float) that CJ was wearing her mermaid dress today and blew a kiss right at her!
After the parade, we made our way with the crowds out of the park, got some dinner at Cracker Barrel (yum) and hugged goodbyes to Tricia, Sarah, and John. We’ll see them again next week but it was so great to be able to pal around with them in the park. Tricia was a doll and so much fun to play with. She really made Charlotte laugh with her jokes and funny phrases too. We were on our way to dinner when we started telling jokes. Roger tried to teach her the “interrupting cow” joke (it’s a knock-knock joke) and Tricia’s interpretation was to say in her toddler voice, “Knock knock. Who’s there? (long pause) MOO!” It had all of us (including Charlotte) in stitches!
Friday dawned bright and…rainy. It was raining from early on and the forecast was pretty much rain all day. The original plan had been to meet up with a bunch of people at Animal Kingdom but we pretty soon nixed those plans. Through conference calls and logistical arranging, we decided to all go to a lovely mall in the area that has nice holiday decorations, a kid area, and a food court. The crew included two of my friends from High School (Cara and Kim) and their kids, my friend Jamie (our current paparazzi), and cousin Julie, Aunt Jeanne, and Julie’s 17 month old Chloe. We pretty much hung out at the mall for about 4 hours talking, letting the kids play, window shopping, and eating lunch. Despite the diverse group and the abrupt change in plans, I think it all worked out pretty well.
As the rain continued, we said goodbye to Kim and Cara and the rest of our “crew” caravanned back to GKTW. Roger, Jamie, and Julie went to get ice cream when we got back to the resort while I stayed at the Villa with CJ, Chloe, and Aunt Jeanne. It was a great visit with everyone.
Around dinner time, we left Aunt Jamie in charge of CJ and Jeanne and Julie drove Roger and I over to Epcot to drop us off for our “date”. The plan was to trek through the Nations of the World and sample the food and beverages (mostly beverages) of each country. We knew we would both drink so we planned to take a taxi back to GKTW.
Here was our itinerary:
Mexico (margaritas and flautas)
Norway (no eating…we just rode the Maelstrom)
China (plum wine and noodle soup)Germany (beer and brats)
Japan (warm sake)
Italy (a sampling/tasting of three white wines)
Morocco (Coffee with hazelnut liquer and baklava)
France (cognac)
England (ale)
Ok, so yes, that’s a lot of alcohol and yes, we were pretty inebriated by the end of the night. In our defense, at most of the countries we shared one drink and shared one serving of each of the food. On that note, I don’t remember much of what happened after England. Roger got me to the car and we got home safely but we both definitely woke up this morning with a bit of a hangover. I rarely drink like that and can probably count three other times in my life when I’ve had that much to drink at one time but Roger and I had a great time. We really enjoyed ourselves!
CJ was up bright and early at 4 AM or so. She watched TV for most of the morning while mommy and daddy “recovered”. It was still raining and we knew the rain was supposed to last most of the morning so we had already changed the Sea World plan to Sunday. Eventually, we ventured down to breakfast and then took in some of the Magical Castle at GKTW that we hadn’t checked out yet. Unfortunately, horseback riding was canceled due to the weather, but we rode the carousel, Charlotte got a “touch up” on her manicure at the La-Ti-Da Kids Spa, and she made her special pillow. We also got to make her star. The ceiling of the Magical Castle is covered in 70,000 gold stars that are about 2” in size (each). Every wish child who has stayed at GKTW gets to put their name on a star and then the Star Fairy puts the star in a special place. Each star is barcoded so they will always know where her star is and she (or Roger and I) can come back and visit it anytime now that she has stayed at GKTW. While we can’t ever stay here again, we can come back to volunteer and visit.
After our time venturing out, we headed back to our Villa for a little more rest. We ordered lunch from Katie’s Kitchen (a GKTW favorite that is really Boston Market) and then trekked out to Downtown Disney just as the weather started to clear. We did some window shopping and souvenir shopping at Downtown Disney. Charlotte got a cat nap and we enjoyed the beautiful weather. The sun finally came out!
Our return to the Villa has included getting caught on our updates (hence this posting) and some more R&R time. This was a good “down” day.
Tomorrow’s agenda is Sea World (finally) and an informal reunion with some HS friends at Downtown Disney. Monday will include packing up from GKTW and if time and weather permits, we may finally return to Disney to check out Animal Kingdom. Then it’s off to Daytona Beach for the second half of our vacation.
To close this post, I’m going to re-copy some of Roger’s posts from Facebook from Thursday. This was after her “long night”…
She had a moment early this morning where she got confused and started to cry "I don't know what I want." Today, to kind of give her a way to explain it, I told CJ she was a caterpillar getting ready to go into her chrysalis. Soon she would go to sleep and when she woke up, she would be a beautiful butterfly. She seemed ok with this. In reinforcing the butterfly analogy, I was talking to Charlotte about it outside of Cracker Barrel and I talked about how things are going to get harder and harder to do because the cocoon is going to wrap around her closer and closer. At that point I made a face like I was getting squished and she found that highly amusing. She laughed a lot today and that’s good for everyone.
We hadn’t really officially decided how to explain what is happening to Charlotte to her but I think Roger’s analogy really nailed it. It’s perfect! Yet again, he amazes ME with his patience and vision. Charlotte had so many moments today when she was chatty and “with it”. She also has times where she just seems to regress or drift inward, not wanting to interact with anyone. She has taken to putting her Romp n’ Roll sport bottle in her mouth like a bottle sometimes (with chocolate milk in it, of course) and I think some of that infantile regression is coming out in all its shapes and forms. It’s been so great to enjoy this vacation with her. I’m glad she has all these moments of happiness!
Wednesday, December 2, 2009
Magic of Magic Kingdom!
So to start where Roger pretty much left off, Charlotte did, indeed, wake up at about 2 AM. Rather, she was awake when I went in to check on her. We read some books and I struggled to keep my eyes open but about 3:30/4 AM she was asking for chocolate milk and wouldn't you know we hadn't stocked up before our evening ended. Roger was a saint for going out to Wally-World (that gift card we just got sure came in handy) and getting needed supplies.
I went back to sleep for a bit but we were rarin' to go by about 8:30. I just hoped that she wouldn't melt down before lunch. We picked up Beth, our paparazzi for the day, and navigated our way to the Magic Kingdom.
Once we got there, we immediately got on the train and journeyed over to Mickey's Toon Town Fair. This was where we got to meet Mickey and Minnie and see their houses. After looking through their houses (a self-guided tour), we got to the the line for "THE MICE" and immediately our super-duper-ooper-schmooper GKTW access passes kicked into action. The Disney employee ushered us into the secret passageway and we had a much shorter wait. When we went in to see Mickey and Minnie, they were so sweet and spent so much time with us and Charlotte. Roger and I both got very heartfelt hugs from Mickey. You could tell that even though he doesn't "talk", he was empathizing with us and sending his good wishes. So sweet! After many pictures and the signing of autographs, we made our way to the next area of characters. We had the choice of seeing the princesses or the fairies. Since we knew we would be lunching with the princesses, we selected the fairies. Again, access is a good thing. There was over an HOUR wait to see the fairies but we got in after about a 15 minute wait. We took Charlotte out of her stroller as we made our way into "Pixie Hollow" and as soon as she saw the fairies, she let go of Roger's hand and went straight to SilverMist. The three fairies there today were SilverMist, Rosetta, and (of course) Tinkerbell. If you don't know these characters, you better brush up on your Tinkerbell movies! Charlotte talked to all of them and she was immediately a little chatterbox. Roger and I were just kind of left in the background to watch. I, personally, saw how happy she was and just started crying. I couldn't help it. The tears were just flowing. I'm not sure how long we got to visit with the fairies but it seemed like forever. They really took their time with her and made every effort to make her feel special. It was so great!
After that, I almost felt like I could leave and be happy. It was that good!
Then it was off to Fantasyland where we rode many rides, got to meet Ariel in her grotto (again, a fabulous meet and greet) and see a smokin' brass and drum marching ensemble play Disney favorites. Those Disney musicians are the best! We pretty much saw all of Fantasyland before it was time for lunch at Cinderella's castle. We had a brief meeting with Ashley, the mom who arranged our Princess lunch. It was nice to meet her in person and be able to thank her. Their family is vacationing at Disney this week as well and gave us their reservations to Cinderella's table. We feel so blessed!
We went through to another meet-and-greet with Cinderella and then up to our lunch. The meal was true fantastic Disney cuisine: I had a mixed green salad with pan-seared salmon, craisins, and blue cheese. Roger had the same salmon but with jasmine rice, and Beth had the pork tenderloin. (Charlotte had a hot dog: fine cuisine, indeed!) Dessert was a cream cheese-chocolate torte that was DIVINE. During the lunch, all of the other princesses (Snow White, Jasmine, Aurora, and Belle) came around to each table and talked, took pictures, and signed autographs, We also had a fabulous view of Fantasyland from our table. All of the princesses gave Charlotte smooches, leaving their lipstick imprints on her cheeks. By the end of lunch, she was covered in kisses!
After lunch, we made it downstairs but Charlotte was asleep after less than 20 minutes in the stroller. We decided to walk a little bit (if for no other reason than to burn off some calories). Roger and I took the opportunity to ride Thunder Mountain and then we headed back to the entrance. We did get to see a little bit of the parade. We headed back to GKTW and Charlotte just woke up about 7 PM.
I can't even begin to express what a great day this has been. It's so nice to be able to enjoy the park with Charlotte and see the joy on her face when she meets the characters. Another nice thing is that since Roger and I have "done Disney" many times before, neither one of us feels the need to see every aspect of every park. We're just kind of taking it at HER pace. Tomorrow will be another day at the Magic Kingdom and my cousin Sarah and her husband and daughter plan to join us.
I apologize that there are no pictures to post (yet) but I promise that there will be some coming. Beth took over 300 (!!) pics of us today and I've already seen a few that are great. We will be posting pics and video soon although much of it I'm sure will not get downloaded until the end of our trip.
Thanks to everyone continuing to keep up with our story. We promise to post when we can but if we don't, it's just cause we're having too much fun!
Rachel
I went back to sleep for a bit but we were rarin' to go by about 8:30. I just hoped that she wouldn't melt down before lunch. We picked up Beth, our paparazzi for the day, and navigated our way to the Magic Kingdom.
Once we got there, we immediately got on the train and journeyed over to Mickey's Toon Town Fair. This was where we got to meet Mickey and Minnie and see their houses. After looking through their houses (a self-guided tour), we got to the the line for "THE MICE" and immediately our super-duper-ooper-schmooper GKTW access passes kicked into action. The Disney employee ushered us into the secret passageway and we had a much shorter wait. When we went in to see Mickey and Minnie, they were so sweet and spent so much time with us and Charlotte. Roger and I both got very heartfelt hugs from Mickey. You could tell that even though he doesn't "talk", he was empathizing with us and sending his good wishes. So sweet! After many pictures and the signing of autographs, we made our way to the next area of characters. We had the choice of seeing the princesses or the fairies. Since we knew we would be lunching with the princesses, we selected the fairies. Again, access is a good thing. There was over an HOUR wait to see the fairies but we got in after about a 15 minute wait. We took Charlotte out of her stroller as we made our way into "Pixie Hollow" and as soon as she saw the fairies, she let go of Roger's hand and went straight to SilverMist. The three fairies there today were SilverMist, Rosetta, and (of course) Tinkerbell. If you don't know these characters, you better brush up on your Tinkerbell movies! Charlotte talked to all of them and she was immediately a little chatterbox. Roger and I were just kind of left in the background to watch. I, personally, saw how happy she was and just started crying. I couldn't help it. The tears were just flowing. I'm not sure how long we got to visit with the fairies but it seemed like forever. They really took their time with her and made every effort to make her feel special. It was so great!
After that, I almost felt like I could leave and be happy. It was that good!
Then it was off to Fantasyland where we rode many rides, got to meet Ariel in her grotto (again, a fabulous meet and greet) and see a smokin' brass and drum marching ensemble play Disney favorites. Those Disney musicians are the best! We pretty much saw all of Fantasyland before it was time for lunch at Cinderella's castle. We had a brief meeting with Ashley, the mom who arranged our Princess lunch. It was nice to meet her in person and be able to thank her. Their family is vacationing at Disney this week as well and gave us their reservations to Cinderella's table. We feel so blessed!
We went through to another meet-and-greet with Cinderella and then up to our lunch. The meal was true fantastic Disney cuisine: I had a mixed green salad with pan-seared salmon, craisins, and blue cheese. Roger had the same salmon but with jasmine rice, and Beth had the pork tenderloin. (Charlotte had a hot dog: fine cuisine, indeed!) Dessert was a cream cheese-chocolate torte that was DIVINE. During the lunch, all of the other princesses (Snow White, Jasmine, Aurora, and Belle) came around to each table and talked, took pictures, and signed autographs, We also had a fabulous view of Fantasyland from our table. All of the princesses gave Charlotte smooches, leaving their lipstick imprints on her cheeks. By the end of lunch, she was covered in kisses!
After lunch, we made it downstairs but Charlotte was asleep after less than 20 minutes in the stroller. We decided to walk a little bit (if for no other reason than to burn off some calories). Roger and I took the opportunity to ride Thunder Mountain and then we headed back to the entrance. We did get to see a little bit of the parade. We headed back to GKTW and Charlotte just woke up about 7 PM.
I can't even begin to express what a great day this has been. It's so nice to be able to enjoy the park with Charlotte and see the joy on her face when she meets the characters. Another nice thing is that since Roger and I have "done Disney" many times before, neither one of us feels the need to see every aspect of every park. We're just kind of taking it at HER pace. Tomorrow will be another day at the Magic Kingdom and my cousin Sarah and her husband and daughter plan to join us.
I apologize that there are no pictures to post (yet) but I promise that there will be some coming. Beth took over 300 (!!) pics of us today and I've already seen a few that are great. We will be posting pics and video soon although much of it I'm sure will not get downloaded until the end of our trip.
Thanks to everyone continuing to keep up with our story. We promise to post when we can but if we don't, it's just cause we're having too much fun!
Rachel
Thursday, May 21, 2009
We are Here in Houston
Well, here we are in Houston, TX.
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
The morning began at 4:30 AM (!!!!) Charlotte unexpectedly woke up before we even had to rouse her. We made it through all the airport rigamarole and all of the flights went very smoothly. Charlotte, in true adorable form, had the flight attendants fawning all over her and got tons of free cookies and her very own airplane wings. She was very well behaved on all of the flights and the DVD player lasted just the right amount...battery dying upon our descent into Houston!
Our "Houston Ground Angel" met us at baggage claim and we were off towards the hospital/downtown area. With all the excitement, Charlotte fell asleep on the way to the hotel. We hadn't eaten any "real" breakfast (just snacks) since the day had started, so around noon, I left Roger and Charlotte to rest in the hotel and set off in search of food.
I found a grocery store about a mile from the hotel and took a good walk there and back. We have a kitchenette in our room so we got some handy stuff for sandwiches and snacks.
When I got back, Charlotte was STILL sleeping! We ate some lunch and when she finally roused and ate as well, we set off for the zoo. The hotel's shuttle will take us to various places in about a 3 mile radius so they dropped us off and picked us up. Handy!
We had fun seeing all the animals at the zoo and got at least one ReeseStrong picture. The weather here is warm and humid but not terribly uncomfortable.
Now we are back at the hotel for some rest before dinner. Between the time shift and the mid-day nap, I think our timing is a little off.
So while this has all been good news and smooth sailing, let's move on to talk about our real purpose for this visit:
I had not heard back from Dr. Khan regarding the exact time and location of our appointment (the medical center here is HUGE!!! It makes MCV look tiny by comparison). First I called MCV to try to touch base with Dr. Khan and see if he had any news. Left a message (of course). Then, on a whim, I thought, "Why don't I just call MD Anderson Clinic and see what time they have our appointment". SOOOO....
I got through to the clinic and the person I spoke with transferred me to another person who seemed awfully confused and said that she hadn't received the needed information including insurance info from MCV so they hadn't made our appointment yet. (WHAT?????)
So I told her that we were here in Houston and expecting an appointment tomorrow. She got some more information from me about insurance, etc. and promised to call me back.
When she did call back, she said that the insurance would NOT be covered as in-network and they were still trying to work out our clinic time. So then I got on the phone and had Dr. Khan paged. When he called back, he seemed just as confused, especially regarding the in/out of network thing. I know that in the past, Roger and I have had some of our regular doctor visits "mis-billed" and they have ended up out of network rather than in network and then we've gotten it fixed. This may be what is happening here. Unfortunately, it sounds like MD Anderson's policies will require us to pay up front (rather than being billed for non covered/out of network services). This is unusual but maybe it's because we're from out of state...I don't know. All I have to say is thank GOD for the recent fundraisers because that's why I brought Charlotte's checkbook! Actually it seems like the latest update is that things are a-ok but we will see tomorrow. Appointment is for 9:30....let's see how long we stay at the hospital tomorrow.
I am sure this will all get straightened out but it's another one of those added stressors that we just don't need.
In the meantime, we actually got a call from the Make-a-Wish foundation today. They had received our application and approval letter from the doctor and are beginning our wish process. In a few weeks, two volunteers will visit Charlotte and try to determine what her "greatest wish" would be. For those who don't know, Make-a-Wish is for kids from 3-18 who have terminal OR long-standing, chronic illnesses that require treatment of 6 months or more. Obviously, Charlotte qualifies. We shall see what the "princess" will ask for (Disney????)
ALSO, we got a call from someone in Andrew Stanton (yes, Pixar fans, THE Andrew Stanton!) regarding Roger's recent email. She just wanted me to know that they had received our request and she couldn't give me an answer yet because they had to check with Disney since (as she put it) "they own us" (meaning Pixar). We shall see. We have also since Roger's email found out about some local Pixar connections and they are working on something on Charlotte's behalf. Perhaps a signed poster, t-shirt or something.
I think that's all we have to report for now.
Rachel
Tuesday, January 20, 2009
Our Story (from the very beginning...)
Charlotte had been complaining of headaches for about 2 weeks. We decided to take her to the pediatrician and they immediately sent us to St. Mary's hospital for a CT Scan. The scan revealed a large (orange-to-grapefruit-sized) mass and Charlotte was admitted on 1/20/09 to MCV hospital in Richmond. She was diagnosed with a PNET tumor (Primitive Neuroectodermal Tumor) with its origin in the thalamus. PNETs are similar in structure (on the cellular level) to medullablastoma. Medullablastoma is the most common malignant brain tumor in children. On the other hand, PNETs are more rare and can sometimes behave differently. From what we understand from her doctors, her pathology revealed a very aggressive tumor that tends to regrow quickly without treatment.
She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.
Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.
At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.
Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.
Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.
Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).
Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.
On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.
We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.
We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".
She had 2 craniotomies in 2 weeks. Surgery was able to remove about 90% of the tumor and after a 3 week hospital stay, we came home for outpatient therapy. She emerged from the surgeries with some left side weakness but quickly regained the ability to walk and use her left hand with support.
Charlotte finished her first round of inpatient chemotherapy on March 13th and finished her second round on April 10th. We started a third round of induction chemotherapy on April 28th; however, a new MRI revealed that her tumor was growing in spite of the chemo.
At this point, we scrapped her current protocol and had a consultation with the clinic at MD Anderson in Houston, TX to get guidance on future treatment of her tumor.
Her third surgery occurred on May 27th and was very successful. Dr. Tye removed nearly all of the remaining tumor with just a few very small bits left over in places he wasn't comfortable going, including some on her brainstem.
Her new chemo protocol developed by the folks at MD Anderson began soon after her 3rd surgery. On July 11, 2009, two days after her fourth birthday, we packed up and headed back to Houston, TX for 30 days (7 weeks) of proton radiation therapy. She also received some chemotherapy during this time. Charlotte tolerated the radiation/chemo combo well and we returned from Texas on September 1, 2009.
Charlotte continued on a revised chemo protocol that included accutane, valproic acid, topotecan (all oral) and velcade (IV 2x/week every 2 weeks).
Charlotte's latest MRI (November 6, 2009) revealed that the tumor continues to grow despite radiation, chemo, and all other treatments. The tumor growth is once again placing pressure on the spinal fluid in her ventricles, causing enlargement of her brain cavity.
On November 8, 2009, Dr. Tye placed a shunt in her head. The shunt drains to her stomach and allows pressure to be relieved.
We are pretty much out of treatment options at this point and our time left with Charlotte is probably limited. We are going to enjoy whatever time we have left, including a trip to Disney World sponsored by the Make-A-Wish Foundation.
We are extremely grateful for the tangible, monetary, and spiritual support that Charlotte's community continues to provide in our time of crisis. In the near future, we will formally establish the CJ's Thumbs Up Foundation (CJSTUF) in her name as a mechanism to "pay it forward".
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