Thanksgiving

It was not the best Thanksgiving on record but I can't complain too much.

First, let me back up to yesterday: we got Charlotte fitted for a larger stroller so we are now set for Disney and all our travels. In addition, all our travel documents and Make-A-Wish stuff arrived in the mail on Wednesday. We will have a limo picking us up at 6:45 AM on next Tuesday to whisk us off to the airport. We are already getting a tentative itinerary together for the friends and family who want to meet up with us while we are in Florida. I'm finally getting excited about the trip.

After Charlotte was fitted for the stroller, we actually managed to stop by Three Oaks Montessori to visit some of her friends. We needed to come by to sign the incorporation papers for CJSTUF (thanks and kudos to Kim for pulling all of this together in little or no time!) so Charlotte got to spend a little time with some old buddies. She was welcomed very warmly by the girls who knew her from her old school.

Later, we had some more visitors at home. Anja and Meredith came over for a playdate and finished watching Mary Poppins with Charlotte. They also shared a LOT of strawberries. Yum. Soon afterwards, her old teacher Ms. Christy (from the "Montessori House") came by for a very nice visit. She brought tons of books for Charlotte to borrow and read as well as a bottle of wine to share with me and Roger. We had a lovely evening socializing and Charlotte got to spend some very quality time with Christy.

My emotions have been all over the place the last few days. Mostly I'm just sad and the smallest thing can make it worse. Right now it's very difficult for me to be around other kids sometimes. I guess that's a good reason not to be back at work right now. I'll also see stuff on TV or in other places that will just spark something and then I'm a basket case (darn those St. Jude's Childrens Hospital commericals!). It is so bizarre to me to think that last year at this time, I would see something like that and think, "Oh, what a good cause." and now all I can think is, "That's MY kid!" It is truly strange to be on the receiving end of charities such as those and then see commercials or hear plugs for them in the mass media. You realize how important they are. The first time I realized it was back in March or April. I was at Costco and they were doing a fund drive fro the Children's Miracle Network. They did the standard plug, asking for a $1 donation to benefit the Children's Miracle Network at MCV. I normally do these things anyway but it was then that I realized: this benefits MY kid! I heard a plug today during the Macy's Parade for Ronald McDonald Children's Charities as well and it brought back all kinds of memories.

When I think of these things, I am reminded of that which I am truly grateful. It is a bittersweet Thanksgiving and I am pretty sure my mood won't change much by the end of the year. You might think it would be difficult to find a lot to be thankful for right now. I am grateful, though, for friends, family, and the extended family that we have built this year. Our network is wide and strong and it is the foundation on which I rest day in and day out. Without this network, I would be a blubbering fool hiding under the bed. I am grateful for the time that I have with my precious girl and I am grateful for my sweet husband who tolerates me and all my quirks.

The bulk of the day was very relaxing. We watched the Macy's parade and then Roger, Charlotte, Kolbey, and I went to Cracker Barrel for dinner. It was simple, inexpensive, and nobody had to cook or clean up. Everyone was happy. We came home and the boys and Charlotte watched footbal while I caught up on some paperwork and computer stuff. Charlotte had another marathon eating day. She took lots of laps around the house (with our encouragement and help) and, of course, read quite a few books.

Tomorrow I am actually going to work for a little bit. I'm leading a birthday party so wish me luck! This should be interesting.

Roger is currently downloading a lot of our old video of Charlotte into the computer for editing. I can't tell you how mixed my emotions are when I watch these old clips of her. She was so tiny! And it was easy to see from such an early age how smart she was...how much she just LOVED to learn. I think every other film clip has her reading or singing or jibber-jabbering in that sweet little voice. I'm glad that we have these memories.

Time for bed. Good luck to all you crazy shoppers out there! Take it easy.

Rachel

We are finished with radiation!

We are finished with radiation! Our appointment this morning was bright and early (7:30) and we drug ourselves out of bed for the occasion. Charlotte finished her treatment and then spent over 30 minutes waking up, drinking her chocolate milk, and then changed into her beautiful "teapot" outfit that came from Aunt B and Aunt Lynn. She was actually not TOO shy for the occasion and did a great job banging the going. Then we got many gifts from the folks at the proton center including a balloon bouquet, a tiara/princess set, a piggy bank, and a toy learning laptop that looks like a lot of fun. We said goodbye to some of the friends we had met while at the proton center, got the a-ok from Dr. Mahajan, and set off for the rest of our day.We decided to go to Chilis for lunch where I had a HUGE margarita. If you don't know, Chilis is doing a huge 10-year, $50 million fundraising campaign for St. Judes hospital. They are 5 years into the campaign and have already collected over $25 million. They were doing a "color the chili pepper" campaign so we decorated a chili pepper and donated some $$ to the cause. ALSO found out that September 28th, selected Chilis restaurants will be donating 100% of their profits from the day to St. Judes. Check out the Chilis in your area to see who is participating!After a yummy lunch (Charlotte ate a good bit of a grilled cheese and mandarin oranges), we tried to head over to the fine arts museum as that was one of the last "places of interest" we hadn't tried yet. Unfortunately, it's closed on Monday. Oh well.We came back to RMH and we've been chilling and packing slowly but surely. We are going to try to get as much packed as possible and then hit the Museum tomorrow before we leave for the airport. We also just spoke with the psychologist who did the neuropsych eval on Charlotte to collect a baseline. The basic results are that she scored in the high average range in all areas except motor and her vocabulary is in the 98-99th percentile for her age. Is anyone surprised? Ok, just checking. Before I forget, thanks to everyone who sent us cards, care packages, and all kinds of encouragement during our stay here in Texas. Everything helped to brighten our time here. Roger now has a ticket to go to the Texans/Vikings game tonight thanks to a wonderful donor to RMH. He should get to see Brett Favre play at least one more time! Monday Night Football! Yeah!

Date Night, Shout Outs

Date Night

I second Roger in apologizing for very little update yesterday. It was a very busy day all around and as mentioned, there were internet issues.
Roger and I enjoyed a wonderful "date" down in Shockoe Bottom. It was so nice to be in a non-hospital setting and talk about everything. We had a great time and a great meal. To continue the "dealing with a newborn" analogy, we defintely felt like that first time when you leave the baby with the sitter and go away for a few hours. You have that strange feeling of joy, worry, and relief all at once and you tell about a million people "call us if you need anything". Much thanks to Grandpa and Juanita for entertaining CJ and Phyllis for chauffering us around.
When we returned, Charlotte was still awake (watching videos!) and a bit whiny. she did get a new dose of morphine but it took a little while to settle down. She keeps complaining of itching at her incision site (understandable). Once she fell asleep, though, we both slept very well. I only remember waking a few times last night and almost immediately went back to sleep. She slept almost straight through till 7 am.
Awoke hungry and has already eaten almost 3 packages of graham crackers. Waiting for breakfast!! Now she's dozing again.
We look forward to our Sunday visitors. Get here before the game starts! I personally don't have a "favorite" this time so I will root for the commercials.
I am sure Monday will be a busy day. All our therapies will come to visit plus we await a visit from Dr. Khan and his crew with news about an oncology plan.
All for now...
Rachel

SHOUT OUTS!

Thanks go out to CiCi's Pizza in Glen Allen for providing us with food the other day. We have a great working relationship with them. We send them lots of customers and they make us look good when pizzas come to Birthday Bashes. Jeff and Nicole and everyone there are "da bomb."We also got another couple of meals from the Yahoo dads club (Todd I WILL call you today, I promise!) and I got to meet another dad to whom I've only talked online (The internet still amazes me).The Virginia Music Therapy Association provided some seriously good (and big) dinners all last week. You also fed some other families with loved ones on the floor. A wonderful bonus.The families of Hanover Montessori School, besides buying us a new freezer, also filled it up this week. My special ice cream cake, or what's left of it, is in there too. Thanks Horn family!The gifts keep coming in from all over and we're doing our best to keep track. It's becoming part of our therapy to go through cards, bags, boxes, etc... and keep track of who gave us what. Your generosity will be major plot point in the Lifetime move that will have to be made some day.I very much enjoyed the birthday date last night. I had the rarest of all delicacies, at least for me, lobster! Actually, the meal combined multiple favorite foods - lobster, trout, and pasta all on the same plate.We then walked around the Slip for a while and experienced a great cross section of "interesting people" who frequent entertainment/dining sections of urban downtown areas. I believe alcohol played a factor in a great deal of it. Lots of fun! I really love Richmond.One of the bigger shout outs goes to Aunt B (Becky) for coming out from New Mexico. She left for home yesterday and, I assume, got back safely. (no need to call) It was great having her here and CJ loved having her around.Hey! It's Super Bowl Sunday! Believe it or not, It keeps slipping my mind and then creeps back up and pounces on me. I'm all for the Cardinals. I want Kurt Warner to win a Super Bowl with two separate teams. I don't think a starting QB has ever done that. CJ is still going to root for the Broncos.

St. Judes?

About that St, Jude's Childrens' Hospital thing...I probably misspoke when I posted that. When we were having a meeting with the docs about possible future plans, St. Jude's came up as an option and I thought they were recommending we go there. It seemed strange but I went with it.The truth is, as wonderful as St. Jude's is, we've been getting the best treatment in the world right here and we can't see uprooting everyone and traveling far away to a place where we don't know very many people.Odds are we'll stay right here for now. I WAS looking forward to camping out at Graceland but I guess that can wait for another day.Now just watch us move to Alaska or India or something.

Going Wireless at the hospital

This update is brought to you courtesy of the brand new Eee PC which was very generously donated by yet another family. And our AT&T wireless card has come in very handy as well since the internet at the hospital is sketchy. Still getting used to the keyboard so forgive me if my spelling is worse than usual.
We had a little adventure today. Charlotte has become a victim of her own success. They have had a rash of critical admissions so they moved Charlotte down the hall to another less critical (and slightly lessroomie and comfy) room. We are lucky that it's a "private" room where all the other beds are separated by curtains. No private shower anymore. We'll all survive but the move was kind of sudden and we had to scramble to get all of CJ's gifts packed and moved. Thanks to Dad and Heather for schleping everything. We've now had two trips to take stuff home. We're getting close to our space limit for CJ gifts so although we hugely appreciate all the things filling up CJ's room, it's becoming a possibility that any gifts you bring to the hospital may be re-donated to some of the other children here. Some could really use them.
There are others here who could use your positive energy tonight: Sarah, the adrable red-haired girl has been having a rough time and on top of that, her mother had a mild stroke this morning. She's already been released so it's not life threatening but it's one more thing they didn't need. There was also a baby that "coded" as we were moving CJ to her new room. The amazing staff here at MCV brought her back pretty quickly but she's not out of the woods.
Speaking of doing things in the woods, CJ hasn't released her bowels since the last monumental event so I believe they're going to force another one. Fun fun fun! She's also still itching and they're trying to minimize the morphine.
I'm actually in the lounge waiting for the Super Bowl kick off so I'll post this for now. As Rachel said, GO COMMERCIALS!!!


Rachel needs to rest...

Tired....
I'm very, very tired so I will keep this short. What a crazy few weeks it has been. I have spent the evening playing some "catch up" at home and will be off to RnR tomorrow to keep things rolling (and romping).
I think my house is cleaner now than it has been since before the holidays (thanks, family!) I haven't cooked a meal in two weeks (thanks to SO many) and I am so grateful for all that we have been given because I know that I would not have had the strength or ability to do anything domestic with all the emotional energy I have had to procure and use. I am learning how to delegate better. Please do not be offended if you ask me what you can do to help and I say, "I don't know." I'm learning too.
The words of wisdom, strength, hope, and peace that have come to me through phone calls, emails, caring bridge messages, visits, and in so many other ways have helped us through. I think Roger and I are now addicted to this "blog"...a good thing because I think we have sucked in a few fans! This journal has become my therapy so despite my fatigue, I must complete at least one entry a day...
Yes, as Roger mentioned, we are now on the "step-down" unit of the children's floor. We are still located on the 7th floor and you will still follow similar procedures to see us/meet up with us BUT the direct phone number to the room has changed so please call our cell phones if you need to reach us. We can receive text messages fairly easily too (if that works for you). She is now in room 707. While we did not want to move, we were lucky enough to end up in a "semi-private" area of the unit and the nurses seem wonderful already. Hopefully, the next week or so will mean quick progress for Charlotte and we will get ready for the next step of the journey. I am sure that there will be more meetings with Dr. Khan (our oncologist) now that Dr. Tye is happy with how she is progressing post-op.
Her left side continues to be weak so we know PT and OT will be a part of her future. Rumor has it that there will be a speech/language evaluation too. Mommy thinks it should go fairly well (wink, wink!).
I will really sign off now. Maybe I'll actually catch the last 30 seconds of the super bowl. Sounds like it was a good game...
Rachel