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.

Feb. 4, 2009

Life in the hospital post-op

She had a very busy morning. She was awake from about 3 am-5 am, just fussy and "not sleepy". We drew some pictures and she finally went back to bed.
After sleeping in until about 8:30/9, she fed herself a BIG breakfast (eggs, sausage, waffles). Dr. Tye clamped her ventric today so we will see how she proceeds with that. If all goes well, we could be released by Monday. PT came by and she worked on walking, standing, and sitting. Shaaron is recommending in patient rehab for now but if she continues to progress enough by our hospital release date, we could look at outpatient rehab. Inpatient would be at Kluge (Charlottesville). Outpatient could be in Richmond at Children's hospital.
She also has a urinary tract infection (oh goodie) so she has started a round of antibiotics. Not so unusual given the fact that she had a catheter along with all the messy diapers. She has actually told us a few times that she needed to go potty and has been making trips to the toilet. What a trooper!
She also had visits from her preschool teacher and Child Life today...all working to keep her engaged and energized. She ate lunch sitting in her wheelchair today ad has done a great job overall. Now she is "chillin'" with Dora and watching some episodes in bed while downing more chocolate milk!!!
That's all the news we know....
Rachel
PS: Much thanks to the Carpenter family for the yummy meal last night. The pork loin and vegetables were fabulous!

Charlotte's 'movements'

Before I proceed further with the Charlotte update, thanks again to the Plank family for a yummy home cooked (and healthy!) meal. Such a blessing.
Charlotte ate a great dinner as well of spaghetti, meatballs, broccoli, and peaches, and (of course) more chocolate milk. She also pooped on her own again. Yay, Miralax!
She has been "vegging" on the tv this evening but that's just fine as mommy needs some time to veg too. We heard from the neurologist that she will have a CT scan tomorrow morning. Her ventric clamp went well today and they will be checking tomorrow to be sure her ventricles are flowing properly with no blockages or mis-flow.
While she occasionally complains of pain, it is not so extreme that it incapacitates her. I managed to give her a sponge bath and comb most of her hair. She's looking better all the time!
Now I'm off to read my Entertainment Weekly while Strawberry Shortcake blares on the TV for Charlotte.
Rachel

Getting used to this routine

Rachel is pulling a three nighter because I need to be places in the mornings which is good and bad. Good because we're getting more and more back into the swing of things but bad because I only got to see Charlotte for about an hour and a half today. What was very nice was that she is looking and acting more and more like Charlotte everyday. I even got invited into the bed to snuggle a little (collective, "Awww!") Of course I was nearly falling off the bed and dosing here and there on top of that so I was in serious danger of rolling off and into the jail-cell style toilet next to the crib.
Tomorrow morning I resume my duties for Romp n' Roll To Go at Primrose School (thanks so much to Babz for covering for me the last two weeks). I get addicted to my kiddies and it will be very nice to see them all again.
We'll be starting our RNR2Go up in Ladysmith next Tuesday which is very exciting. If you're up in that area, stop by Miss Alyson's Countryside Daycare and say hi.
Sounds like a Romp n' Roll commercial, eh?
Now here comes the next fun part...To all of those people who were willing to sit with/watch CJ once in a while, there's a good chance we'll be needing that soon. She might (emphasis on "might") be released from the hospital Monday or Tuesday. With Rachel and I both trying to keep RNR moving forward, and other events coming up, we could use a few good volunteers. I'd like to ask folks to please reiterate their willingness to participate and what times they may be available including possible (but not probable) overnights. I'll pull out the calendar and start signing people up as I can. Thanks in advance.
Then again, everything could change at a moments notice so take it all with a grain of salt. :-) I do know that when we get serious into the rehab and chemo sessions, all bets are off,
Classes at RNR were great tonight and I even got to see a mischievous side to Miss Audrey that I hadn't seen before. Love to see dem kiddies growin'! Also love having a functional water fountain in the back. Thanks Daddyo!
Rog