Hooray for poop!

Quick update:CJ pooped (twice) yesterday. Hooray for poop! She was in bed pretty much all day but we had the IV fluids going. She also ate a little bit for us so we are feeling much better about her overall health. Last night Roger gave her the first dose of the valproic acid. We also had to give Pepcid with it as it is supposed to cause stomach upset. I was kind of amused by the fact that both the valproic acid AND the pepcid have "may cause dizziness" on the prescription label. She is going to be one dizzy chick! I guess that's why we give that medication right before bedtime!This morning she was up and at 'em kind of early so Roger and I could go to our various activities. She has a playdate over at the Hayes house this morning so I am hoping that she will be able to actually engage in some interactive fun rather than just being a bump on a log. We shall see. Off to a busy weekend!Rachel

In the last 3 days, Charlotte has slept (and slept) (and slept).

In the last 3 days, Charlotte has slept (and slept) (and slept). Wednesday wasn't much better than Tuesday. She spent most of the day asleep, practically catatonic, and/or in bed resting. We were really getting worried since she wasn't taking in much food or drink and she hadn't pooped in DAYS. Yesterday, Roger took her to the clinic bright and early. She was still very sleepy. They agreed to give her IV fluids and she got about 2 hours worth. They also said that if she didn't improve significantly, they would have IV fluids brought to the house with a pump (we've done this before). She did get her Velcade but we had to put off the flu shot yet another day. We also got the prescription for the valproic acid BUT she threw up on the way home so Roger didn't get a chance to fill the Rx. She went home and got Zofran and went almost straight to bed (again). She was asleep by 5:30 PM. She slept the whole night. Now she is up and at least drinking a little (she has to drink a few sips before I will let her watch more video). Roger also got her some pedia-lax. Not as strong as the lactulose but with the lactulose she has to drink a LOT and with this she just has to keep some fluids going. I am hoping that if/when she poops she will feel much better. She already seems to have a bit more energy today but she's also still in bed and just watching videos. I am debating whether to take her to PT this afternoon. Going to kind of play it by ear.Aside from that, Roger and I just keep staying busy with work and our other endeavors. We have a busy weekend ahead with RNR events galore! Also, have you looked at the ticker lately? We've surpassed 160K!! Wow! That's an average of 17K hits per MONTH or almost 600 hits per DAY! Y'all are a devoted group of fans. I have said it before but it is worth repeating: Thank you to everyone who has given us their support these past months. Whether you have made us a meal, provided monetary or gift card donations, given gifts for Charlotte, covered shifts at RNR, organized fundraisers, sent a card, gave a hug, or just prayed for us and our little girl, we appreciate your support. Roger and I hear a lot about how "strong and amazing" we are. We definitely appreciate the praise and I have to admit that I'm kind of amazed myself...but NONE of our strength would be possible if we weren't bolstered by the incredible support that you provide. Even if we don't take you up on something you have offered, please know that just the fact that you OFFER to help lets us know that we have a soft place to fall if we need to. That makes the whole process just a bit easier. With that, I will close and ready myself for a busy Friday and even busier weekend. Happy Fall Y'all!

So here's the latest:The word of the day/week is TIRED.

So here's the latest:The word of the day/week is TIRED.Charlotte woke up Sunday morning with kind of a low-grade fever. She never went above 100 but she was very tired and spent most of the day being a couch potato. We let her rest and scrapped plans to go to the field hockey game. She just enjoyed her last full day with Granny.Meanwhile, Roger and I did check in on the Ladies Field Hockey team. We got there with about 15 minutes to go in the game and watched them beat Wooster 2-1!! That's three wins in a row! Then we headed off to a wedding.Monday was B-U-S-Y. I had a dentist appointment. We shuttled from there to the clinic where we waited. And waited. And waited. What was supposed to be a 10:45 appointment had us going in to get vitals at 12:15!!! Apparently the clinic was overbooked (go figure) so they were running behind (an understatement). I let them know in my (hopefully) nice but forceful way that we had an OT appointment at 2 PM and we would need to leave by 1:30 if we were going to make it on time. This was right before 1 PM. Fortunately, her Velcade had been ordered and was ready so after a cursory update with the NP, we decided to forgo the flu shot until Thursday, give the Velcade, and then she was going to have to call me about the Valproic Acid. Because apparently even though it has been on her protocol since we got back from MD Anderson AND we were in the clinic last week for a visit to check on anything, they waited until MONDAY to try to verify the dosage and treatment protocol. At least she got the Velcade. SighThe Velcade pretty much wiped her out. We did manage to get to OT on time and she worked really hard but she barely lasted the 45 minute session. Then we took Granny to the airport and headed home. She was asleep before 9 PM (early for her) and slept till after NOON today. It's a little after 5 PM and she is back in bed. Not asleep but she wanted to get in bed and watch movies. In the little time she was "up and about" today, she and Roger went to the grocery store and then I met up with them at Ashwood Gardens to get our annual pumpkin collection. As many of you know, Roger is our resident pumpkin artist and always comes up with some creative creations. I have some ideas for him so we will see what happens this year...Oh! More big news on the fundraising front: My good friend Amy held a yard sale for Charlotte at her home (Cincinnati) last weekend and raised about $2000 for us!! I was so excited when she called to tell us. Thanks so much, Amy! (and friends). That is about 3 months of OT/PT!Also, discussion is moving on the nonprofit/foundation front. As usual, we put the word out on CB and our network gets rolling. We are hoping to have something in the works before the end of the year. That's all I have for now. Time to go fix some dinner...Rachel

I won!!!!! Rachel's Mommy Makeover

Today was yet another shining example of how things come together. As of 8 PM last night, Roger and I were in a bit of "panic mode" as we were struggling to figure out the schedule for today. There was lots going on and much to coordinate. Fortunately, my mom took Charlotte to PT, Roger, Emily, and Sam were able to cover the front desk at RNR where needed, and I was able to actually enjoy my makeover.The makeover event was fun. I went to Salon Del Sol at Three Chopt and they did my hair and makeup. It wasn't a crazy change. She just shaped up my hair and gave it some funky but classy highlights. Then I got to "glam up" for my evening at Shops at 5807. Thanks to the folks who came out! It was a nice crowd. The other two moms and I were sequestered away upstairs until the big reveal. It was just like being on one of those TLC shows!! Then we got to come out and see all our friends and family. In the end, it turned out that I received the most votes. YES!!!! I won!!! I was really surprised and touched. We joked with Kate Hall (at Richmond Mom) that we are going to get "shut out" of future contests since we seem to be winning them all!! We promised her we would use our fabulous network to help other deserving folks win future contests. Poor Charlotte was exhausted and practially falling asleep on Daddy's shoulders so we didn't stay at the event for too long. Thanks to everyone who voted for me and thanks to Kate Hall at RichmondMom.com, all the vendors at Shops at 5807, and all the stylists at Salon Del Sol. The woman who did my hair came in on her day off and really treated me well!! I will hopefully post pictures soon.Aside from the great outfit that I already got, I also get a family photo session, lots of gifts from "By Invitation Only", and a few other fabulous gifts.In other news, I spent Monday and Tuesday at Sweet Briar College near Lynchburg presenting at the Central Virginia Training Center's annual conference. This was such a nice change of pace for me. As many of you know, this is what I did in my previous (read: before Romp n' Roll) life. I love sharing my knowledge and expertise in the area of special education with others. My presentations (four over two days) were very well received and I enjoyed doing them. I also got to see quite a few people with whom I used to work so it was a nice time overall. Do I miss it? Kind of...but I also love what I do now. I just want to do too much. Charlotte is doing well. We have OFFICIALLY run out of insurance-covered visits for PT/OT so we are very grateful for all of the money that has been raised for us so far. At $90 per visit (twice a week), her therapy bills are going to add up very quickly. That will be about $720/month! (And some of you thought daycare/preschool was expensive...that's for just 2 hours per week!!!)Charlotte continues to tolerate her medicines well. We meet with the doctors again tomorrow to check labs, etc. and prepare for next week. We are back to the Velcade and add in a new drug (Valproic Acid). One month from now, we will have another MRI too so the countdown for that begins. I can't believe it's October already!!! It seems like just yesterday I was sweating my tail off in Houston and now we are greeted with this glorious fall weather. Ok, I must end this before it becomes a novel and try to settle in for the evening.Rachel