Onward to 2011

Sorry that the blog has been kind of quiet lately.  There have been a couple of reasons for this.  Although we haven't had any official Foundation events to promote, I am happy to report that since our last post we have received some very generous year-end donations.  Thank you for helping us keep our mission alive.    

Another very exciting announcement is that CJSTUF is hiring its very first paid employee.  In assessing our goals and needs, the board determined that the best way to accomplish our aims was to have a part-time Foundation Administrator and Event Coordinator who can help us accomplish this.  In a perfect world, it would be great if Roger and I could fill this role but our other professional obligations are keeping us otherwise occupied at the moment.  Anyway, we received a LARGE number of applications and have narrowed the field to a few select candidates.  We hope to have a decision by the end of the year.  We're very excited about this so stay tuned!

Finally, in case you haven't heard through the grapevine, Rachel has started her very own personal blog.  She's aiming for it to be an equal mix of social commentary, personal musings, and cultural discoveries.  If you want to follow some of her "non-foundation-related" writing, check it out. 

We hope everyone is staying warm during what is definitely WINTER weather.  If you have a chance to make a snowman, take a picture for us and email it or post it to our Facebook page.  Here are some of our favorites from 2009:

Snow and Sun

The sun is out but the world here in Ashland is still a blanket of white. Reports vary, but I am thinking we got somewhere around 15 inches when it was all over! One of the best pics we have is our hammock...check it out...

We had asked our Facebook Fans to post pictures of Frosties made in honor of CJ and they went to work yesterday. Click HERE for the highlights (so far). I love the variety and some of the many "girly" snow-people. If you're not on Facebook but want to make a Frosty for CJ, just email it to me at rachel@cjstuf.org and I will post it for you. Eventually I'll get them onto my picasa site which will eventually be on the CJSTUF website. All a work in progress.

The Glass family came over and built a snowman just for CJ in front of her window. He's rather rotund so we call him Frosty the Hutt! They did a great job. You can find him in those Frosty pics in the link above.

While a few readers had to cancel/delay their appointments yesterday, we still had a steady stream of visitors over the day. Some of our neighbors stopped by. We got Aunt Lynne and Uncle Vance skype-ing in from Denver. They read to Charlotte last night and Aunt Lynne is reading to her again as we speak. We have a pretty full docket again today and I think most everyone is going to make it.

Charlotte was up off and on throughout the day. When she was awake, she was drinking chocolate milk (very slowly), responding to questions, and even gave Roger a hug at one point. The nurse came by to hook up the morphine pump and she has been calm and peaceful the whole time. No pain flareups so that is good. We have continued to administer the other meds every 4-8 hours.

I will reiterate the positive vibe that we are getting from these visits. The house is comfortable, calm, and cozy and I think a lot of that is the regular visits from others. It keeps us from getting too mope-y and gives us good distraction. Plus, Charlotte can probably only stand so much from her parents...she needs variety! I am so glad that we can keep her at home. It makes all the difference in the world.

Forgot to mention this from the other day: we had a special delivery from MCV via Melissa O. (a music therapist who works at MCV and also a good friend). When CJ was in the hospital, Heather (from Child Life) would always bring these plastic Care Bears in to visit Charlotte. They were for her to borrow, not keep. As Heather pointed out, kids who are in and out of the hospital are frequently given much but it's so good for them to learn that not everything that comes to them is for them to keep. They sometimes have to share. Anyway, the Care Bears became a constant ritual and Heather would always make sure the bears were in CJ's room any time we were hospitalized. Sometimes they were even waiting in our room before we got there! Another favorite she and CJ shared was the Wonder Pets so sometimes Heather's Wonder Pets snowglobe would come to visit as well. Long story short, Melissa brought the purple Care Bear and the Wonder Pets snowglobe on Friday for CJ to "borrow".

I took the first shift last night and slept on the trundle bed next to hers for a few hours. After the 3 AM meds, Roger and I switched. We actually have a birthday party at RNR today so he will be heading in to work later this afternoon.

At the moment, we have another angel who stopped by with his backhoe to plow our driveway and Kolbey's driveway. Amazing!

Hope everyone is enjoying their weekend, whether you are somewhere snowy or not. It is still difficult for me to believe that the holiday season is upon us but every once in a while I realize that Christmas is this week.

More later...R.

Snow!!!

The snow just kept coming down last night! I am not sure about exact levels but I have not seen snow like this fall in a one-day period in the Richmond area in a LONG time. We will surely set some records here.

It is almost 9 AM and it's still snowing! It's been going pretty steadily since 5 PM.

Those of you who live in the Richmond area know that while snows like this can happen, they are rare and far between. When we do get snow like this, it is typically in January or February, not December. Here's where I am going with this: this snow is a gift for Charlotte! I am sure it will be her last snowfall and while she won't be getting out and playing in it, she can see it from her window. Is it also a coincidence that Frosty the Snowman was on TV last night? I think not! I have asked everyone on the CJSTUF facebook page to build a snowman for CJ today (if you live where there is snow). You can upload a "fan picture" on the Facebook page as well so we can see your creations.

It's the little gifts.

Charlotte woke up about 11 PM last night as I was giving her meds and she drank a good bit of chocolate milk again. She's been drinking and stirring off and on all evening. I went to sleep about midnight but Roger was up with her and did her 3 AM meds. I woke up to find that two police cars were in our cul de sac (called out to one of the houses for some reason). With all the snow, they actually got stuck! Roger went out at one point and tried to help dig them out. A snowplow came through (which I am sure was a result of the policemen calling them out. There is no way they would come to our street at this point.) but it didn't seem to help. Anyway, at some point, the cops got everything fixed and were able to leave. THAT's how crazy this snow is!

I stayed up with her after 3 and got some sleep on the trundle bed next to hers. I put the Spa Radio channel from Pandora (on my iphone) on and the music was so relaxing. We were both snoozing.

We had some good mother/daughter moments around 7 this morning as I gave her next dose of meds. We have the morphine pump but I told our nurse to take her time getting out here today. I know the weather has made things nasty and we are doing ok.

A few folks did sign up for early morning reading but the weather has canned that as well. All is good! If you have signed up for any time this weekend and cannot make it due to weather, please just come when you can. You may call or email us ahead of time if you want to check. We completely understand. On the other hand, if you live in the neighborhood and want to venture out, come on down to Slash Court! We'll have a coffee/cocoa party!

She has been drinking the chocolate milk off and on and I actually stepped away from posting this for a bit because she has started talking pretty well. She is fairly alert and saying little things to us, answering questions and smiling. She is comfortable. That is good!

I had posted yesterday that we found a group of people (three separate people, actually) step up to help the family in Denver. Well, I received a great email last night from my high school friend Cara in Florida about this and I had to share. Her email text follows:

Just wanted to share six degrees of CJ that gave me chills today.

My good friend Katie lost her mom to lung cancer on December 22nd last year, so we've been talking some lately about doing something to honor her mom in some way, and Katie really wanted to find someone struggling through a similar situation that she could help in her mom's name. Of course Charlotte came up when we were discussing all this. Remembering that Katie and her family lived in Denver for years, I mentioned the family that you had "shouted out" for thinking Katie might know someone up there who could help out.

Today was a half day at my boys' school, so we met Katie and her 3 kiddoes at the mall for lunch and a Santa visit. Katie told me about her best friend from Denver, who is a mom of twins and who's "Moms of Multiples" group had money to give burning a hole in their pockets. Katie GLOWED when she was saying how her friend jumped onto the opportunity to help the family you know from Houston. What are the chances that these things happen? (This, to me, is how God works).

So a mom from Richmond who grew up in Port Orange travels to Houston for treatment for her little girl, and meets a family from Denver in desperate need. A high school friend of the Richmond mom has a friend raising her kids in Port Orange but who lived in Denver for years. This friend lost her mom last Christmas to lung cancer, and was searching for a way to pay it forward and honor her mom. So she calls her Denver best friend and hooks her up with the Denver mom thanks to the Richmond mom's thoughtfulness and caring in her OWN time of desperate need.

Thanks to Charlotte. And you.

Did you follow all that? This is what we want CJSTUF to be about. This is "where it's at". I am constantly amazed at the way the Holy Spirit works within our lives and within our communities to help us help each other. Complete strangers have been drawn together from all over the country and all over the world. Now they are not just helping us but reaching out to help others. Charlotte is the catalyst but YOU are the engines. The Holy Spirit is the fuel to keep that oil burning! And it never runs dry!

There's your Guideposts spiritual moment for the day. If you are somewhere there is snow, stay home if you can and be safe if you must go out. If you are somewhere sunny and warm (or at least sunny), enjoy the day and think Frosty the Snowman thoughts!

HUGS,
Rachel

As Good as it Gets

Today has been an ok day (so far). She slept pretty much through the night and only roused at about 6 AM. I administered her needed meds. At first, she was not able to open her mouth to talk or eat but after the medications got into her, she actually took a sip of chocolate milk and then proceeded to drink a full 8 oz (a rompy cup) full. She talked to Roger a little bit too. The day has consisted of:

Visits from friends, schoolmates, and Noah's Children staff to read, sing, and talk to her (and us).

Administration of medications (all timing related so lots of tracking involved)

Awaiting the snow and now watching it fall. It is coming down pretty well right now and anyone in the Richmond area (or those keeping an eye on the Weather Channel) know that we are headed for some good snow. I guess it's a good thing that everyone bought out the grocery chains and filled up their gas tanks.

She has been sleeping, dozing, sometimes slightly awake, and even occasionally responsive to questions with head nods and appropriate waves, etc. Sometimes she is even snoring. She hasn't eaten anything since this morning but she genuinely seems comfortable and content. That makes me happy.

The visits have all been wonderful and I was really amused when one of her preschool friends said, "Her hair grew back!" and another one said, "And her face got a lot bigger!" I love the innocence of children. I think they had a good visit. At the same time, I think Roger had almost as much fun entertaining the kids who visited. It's good therapy all around.

They will be delivering a pump for the morphine tonight and we will get it started tomorrow. This will hopefully even out her morphine dose while allowing us to "push" some extra if she seems in distress. It's hard to say where things will go from here (there are multiple possibilities) but I doubt she will be alert on a regular basis from this point forward.

I have VERY good news on the Denver front: I have had THREE people contact me about helping with our family in need that lives in Golden. I have sent out an email to everyone, putting all in touch with one another, so hopefully the ball is ROLLING. Be on the lookout. We may use this blog or our website as a vehicle to help with PR or networking as we help this family. Thank you to those of you who have agreed to help. Lara Lombardo, a friend of Roger's from high school (Denver North!), helped to organize a bake sale in Denver recently for CJ and they raised a little over $400. We have asked them to pass these funds directly on to the family in Denver in CJ's honor. Thanks to any of you who participated in that. The CJSTUF network is working already! THIS is what it's all about!! (No, Roger, it's NOT the Hokey Pokey!!)

OK, I understand dinner is on its way so I plan to go watch the snow, enjoy my daughter, enjoy a meal, and stay safe and cozy indoors. Y'all do the same!

Rachel

So much to say...

So much to say! First of all, I have a feeling Roger is going to add his own two-cents regarding the last 24 hours or so. Just be ready for some double-postings.

Those of you who have been on Facebook, you've seen some of our pictures from the Baltimore trip. I will post a few here as well.

Sunday started EARLY. She woke up at 1:30 (AM!) and Roger got up with her. We tried to get it in gear for the Baltimore trip and I think we did ok considering our tired-ness. We made it to the Aquarium by 11 or so. It was amazing! There were so many different kinds of animals and lots of creatures to see. We also had lunch with a great view of the Harbor. I really enjoyed the jellyfish exhibit.

I need to detour on this post for a moment and just give a shout-out to the family who made this whole weekend possible. When I was growing up, we were close friends with the Hansen family. They owned a little mom n' pop motel (The Copacabana) on Daytona Beach and our families carpooled and did many activities together. I have fond memories of swimming at their hotel pool and playing with the girls (Summer and April). They were one of the stabilizing forces in my life after my dad passed away and we have always been grateful for their kindness.

Anyway, after high school graduation, I kind of lost touch with the girls but my mom has remained in contact with their mom (BJ). The motel has since been sold and the entire family is scattered far and wide across the country but we reconnected on Facebook right before Charlotte's diagnosis. Throughout this process, they have been one of the many "forces of good" helping us out. From across the miles, they have sent gift cards, meals, notes of encouragement, and (last but not least) set up this Baltimore adventure for us. Thanks to their connections, our tickets to the football game, hotel, and passes to the aquarium and other local attractions were all provided to us free of charge! It was amazing.

So back to the story...after the Aquarium, we headed over to the hotel. It was the Waterfront Marriott...right on the Harbor. We had a Hospitality Suite with full living room and kitchen on the 10th floor overlooking the Harbor. We also had a room with a King bed for us and another room with two beds for Devon and Patrick Mattys (our football guests!). I was only sad that we were able to enjoy the room for only a night.

We weren't there long when we met up with Devon and Patrick. Roger and Patrick headed off to the tailgating area and us "girls" followed along shortly.

After being up since 1:30 AM with only a light nap in the car, Charlotte finally petered out at about 5 PM...just in time for us to get to the stadium. That was ok because she slept until right before kickoff (almost 8:30). We all had a great time at the game. It was a PACKED stadium with crazy fans and lots of fun. Charlotte made it through the 3rd quarter and then we headed back to the hotel. Actually caught the last part of the game in our hotel room. When we got back to the room, we found a plate of cookies, milk, and a cute bear for CJ with a lovely note from the Marriott staff wishing us well. Very sweet!

Charlotte then stayed awake until 5 AM (!) with Roger and I taking turns with CJ duty. This morning we reversed the process and headed back to Richmond. We made it in 2.5 hours (not bad with just some traffic in N. VA and we stopped at Indulgence Salon in Ashland where Miss Heather and the rest of the staff spoiled us. First, they gave us a catered lunch along with some books and presents for the girl. There was a HUGE Frosty sign made by the kids at the Ashland Community Preschool with pink and purple handprints on it. Then, Charlotte got her nails and face painted while Roger and I got thirty minute massages and I got my hair washed and styled. It was a lovely day and the staff there were so generous and accomodating.

Then it was home (finally) where we have been making mad dashes to get all the last--minute stuff done before the trip. The limo will pick us up at 6:45 AM so I may not sleep much tonight but that's ok. I can wait till tomorrow to start vacation mode.

A few final notes before I sign off: 

1. The website is MOVING right along. It is going to be so great when it is done and I think it will be ready to launch before we get back from Florida. It will include a way to schedule our reading vigil for CJ so look for more info on that soon.

2. The Mechanicsville Moms are hosting a Used Book Sale for Charlotte at Romp n' Roll (Virginia Center) on December 10th from 3-7 PM. Please stop by to support these ladies.

3. Finally, Beth Boston held the craft sale a few weeks ago with all profits from Snowman craft sales going to Charlotte. She raised a nice chunk of change for us but she still has some "snowman soup" packets. These are very creative, very cute hot cocoa packets that make great gifts for teachers, friends, and family. Cute stocking stuffers! They are $2.50 for regular packs and $3 for sugar-free. These are local (Richmond area) sales only but if you are interested, please email her at bbunch05@gmail.com

Ok! I'll stop it now...I mean it! (Anybody want a peanut?)

HUGS, Rachel