Ok, Ok, we get it!

So apparently if you go more than 48 hours between posts people start to panic a bit. In the last hour or so we have been getting a trickling of emails and phone calls saying, "Is everything ok?"

Yeah, it's ok.

As ok as it gets at this point.

First of all, I want to thank everyone for the support and kind thoughts following my Christmas post. I appreciate being able to express myself honestly and I appreciate all the support that we are feeling. I have said it before but it bears repeating: we feel strong through this because we know that we have a very soft cushion on which to fall and that cushion is YOU...our support network.

The Butterflyaway event at Romp n' Roll yesterday was small but successful. We will repeat it on January 2nd. I would like to repeat that this event is for anyone (families, friends, adults, kids) that has questions about dealing with death of a child, grief, and any other aspects revolving around Charlotte's passing. I believe that the January 2nd event is planned for 5 PM. Be there or be square!

We continue to have a slow and steady stream of readers. The days stay busy from between 6 AM (or so) until 8 or 9 at night (sometimes later). I asked Charlotte today if she enjoys the readings and she nodded her head yes.

Yesterday, the nurse came to change her dressing and reset the morphine pump. We noticed yesterday that she was having difficulty swallowing again and that her throat muscles seem tighter. We have also noticed a marked decrase in her muscle tone all over her body. The doctor recommended increasing the Atavan slightly but otherwise not much has changed. I think that in the last 24 hours, we have seen a slow but steady decline in her status. She is sleeping a lot. It's difficult to tell since she keeps her eyes closed a lot but I would say that she has only been truly awake for a few hours today. Lots of snoring noted. She also seems to feel more comfortable now in a more prone (rather than upright) position. This is all to be expected so neither Roger nor I are surprised. We are ready and we want this to happen as it will. Who knows....she could live another week or she could pass tomorrow. It's so hard to determine.

Dr. Archuleta is coming to visit again on Wednesday so we will see what his assessment is then. We have also called the acupuncturist to see if there is anything that she can do, even if it is just to make her a bit more comfortable. She is coming back tomorrow afternoon.

I have to relate another story that goes along with the "sometimes people just don't get it" theme. Roger went to the doctor this morning. No big deal. He was just due for a check up on his blood levels (cholesterol, etc.). While the nurse/tech was taking his blood, she was asking all kinds of questions like, "so how was your Christmas?", etc. Roger was trying to be polite and slightly vague but he was wearing his Bald Chicks Rock tee with Charlotte's picture and the lady still just wasn't getting it. Finally he said, "well, she has cancer so it hasn't really been the best Christmas." I still think she didn't get it. It's amazing how even some people in "healthcare" can be so clueless sometimes. In my opinion, he was far too polite.

Anyway, Roger and I have been having a Harry Potter marathon going for the past few days, watching all the old movies. Always a favorite for us so that has been enjoyable. We also used some gift cards to get some fun stuff at Barnes and Noble, including Who Framed Roger Rabbit. One of Roger's FAVORITE movies of all time.

So I guess that's it. I promise we will try not to keep everyone in the dark for more than 48 hours at a stretch...on to 2010. That's all I have to say.

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.

FINALLY HOME!!

Oh, Home Sweet Home...
It was so good (in so many ways) to be home last night. We got settled fairly easily, thanks in part to Auntie Retta delivering the bedrail and unloading the car. She had a small dinner (after she had already eaten at the hospital) and then watched some TV in the comfort of her own couch. There were lots of laughs and giggles all around.
She fell asleep around 8:30 PM and slept till around 4 AM. Woke up asking for some pain medicine and was then up for a little while (Thanks, Rog!). Still sleeping at 8:30. Hooray for no "beeps" or early morning docs in our rooms!
We are looking forward to a day of some rest, some walking/hand movement practice, and maybe some visits.
Thanks to everyone who has showed interest in the bracelets. I think you are keeping Melissa busy! We will be looking into a PayPal option as well that would go directly into Charlotte's account. Stay tuned!
No updates on the Care Calendar yet but I need to look at the upcoming week's schedule and see what our needs will be. Grandpa and Juanita Bonita will be here Monday so that will help a bunch.
We are happy to receive visitors (especially kids!) as long as we are home. You can call to check before you come (just to make sure we didn't decide to run out somewhere). Roger is working most of today, I'm working most of tomorrow, but CJ is HERE!
See y'all soon,
Rachel
Roger's thanks:

Very quick note between classes.
I'm typing this on my very cool super duper schmooper new laptop given to us by Aunt Jamie Jamie Tamm Tamm the name so good good you gotta say it twice twice and her coworkers down in Daytona Beach! Thanks guys! The Eee PC will go to the Child Life dept. at MCV for use by another family. Thanks Murphys!
The big wad of bracekets I brought to the store this morning are almost gone already! Thank you all for your enthusiasm. Melissa has no idea the monster she has unleashed! We'll take it.
Time for Rhythm n' Roll! Wish me luck! :-)
Rog

Adjusting to homelife again

A busy but still relatively quiet day.
She slept in until after 9 AM (woo hoo!), had some breakfast, and then we watched the first Madagascar movie. She had never seen it before (just the sequel) and she laughed a LOT. Great to see her so happy. We did try to walk two times and she was not too happy with that. Did it very begrudgingly. She also sat at her new lapdesk (thanks Farmer family!) and did some drawing with markers and decorated a princess paper doll with stickers. Busy Day!
Then we had lunch...a wonderful meal from our freezer from the Quinley family. After that it was definitely time for a nap and she has been resting peacefully.
I have spent the morning "settling in" and unpacking some of her stuff. The wheelchair has been delivered although it is not the one that we will be using on a more permanent basis. They didn't have the right one for her in stock so brought us this one temporarily. Her home health supplies also arrived today. We are not sure right now whether we will need a ramp. We are in the process of completing the paperwork for the county right now (we need a permit) and have offers from two people for ramps so we will try to get back to you soon. Fortunately, she is still small and relatively light so if we need to carry her in from the car, it's not such a big deal.
Other good news: her need for pain medication has definitely lessened. I have been trying to forestall the pain medication whenever possible and distractions and other entertainment do seem to help. She has just had a dose of regular tylenol about every 8 hours. Yay!
Time Magazine came today and what was on the cover? How Faith Can Heal...how interesting and timely. Can't wait to read it.
More updates to come. I think Charlotte is waking up.