We Are HOME!

Charlotte had a great day yesterday. She was moved off the PICU to the regular peds unit (7 East) and spent most of the day entertaining herself and everyone else. By the time I got there in the mid afternoon, she was singing and just looking her adorable little self.

She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.

If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.

We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.

Gotta run and get ready for a busy day!

Rachel


Update: We are HOME!

She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.

In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.

We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!

Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.

We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.

My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!

It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.

Signing off...
Rachel

Quick Update

Quick update:
I feel like I have been on the phone or managing stuff all day. Between tech support for our DSL (that did NOT get fixed with an onsite visit today), other business related stuff, and other misc. phone calls, it feels like I haven't stopped. What time is it?
Anyway, the main update is that we have determined that Dr. Khan and Charlotte's oncology care at MCV is considered in network and if all goes well, we will start chemo tomorrow (Friday). We will get everything with the stem cell stuff worked out and have a few options including:
0. Our rep from Care Connection is talking to the VA insurance commission to see if they can intervene. It seems ridiculous that there is no Virginia hospital (especially a teaching hospital) on their "approved" list.
1. Dr. Khan has a peer-to-peer meeting set up with another doctor who works for humana and hopefully they can work things out without filing a formal grievance.
2. We have the "formal grievance" option if none of that works but the good news is that we can start chemo and have time to deal with the stem cell issue.
Miss Charlotte is much happier now that the catheter has been removed and she has been a busy bee today, making pictures, "wrapping" presents with paper and decorating the wrap and being in all other ways a busy and adorable preschooler.
Gotta run and be busy some more...
Thanks again for everyone's ideas, comments, support, and help. I noticed on the news last night that the topic of health care is hot, hot, hot on the agenda in DC right now so this is a great time to make your representatives aware of how frustrating our current system is.
Rachel

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