Friday, October 16, 2009

Very quick update. CJ is doing OK. Just OK.

Very quick update. CJ is doing OK. Just OK. Definitely not thriving but hanging in there. She's still pretty tired although she has been eating and walking around a bit more.She slept nearly all day on Wednesday which meant she woke up at 3am on Thursday morning. Mommy had to work all day Thursday so I took CJ duty. We read books, watched Finding Nemo, ate some...I took her to the clinic to get her Velcade and to get her dressing changed. Nurse April is so good at it, Charlotte didn't even whimper once as she pulled of the cover. Nurse Debbie talked at length with me about how she's doing and whether we should continue the IV fluids overnight (we will).After clinic, we went to People's Bank to drop some more paperwork for the stimulus loan and drop off a $1550.00 check we got from a bazaar held at a church in Charlotte's honor. Thanks so much everyone. We are increasingly having to use CJ funds for things like PT, OT, possible leftover bills from the proton radiation treatments, it is being utilized. While we were there, Charlotte ate plain M&Ms. (Won't touch the peanut ones)After the bank we went and got "PIZZA AND ICE CREAM!!!" (well only pizza really) at COSTCO. CJ ate about 1/3 of a piece which is pretty good and then we went shopping. I bought her the Snow White DVD set so if anyone was thinking of getting that for her for Christmas, sorry to foil your plans. After an afternnon nap for both CJ and Daddy, we watched it and she watched the whole thing even the scary parts.This morning, Mommy got to get up about 5:30 to take care of the pump. CJ was eating waffles when I came down."Her Devon"is in town and will be visiting sometime today. Should be a bright event in a rainy day.Gotta go play...I mean work.

Since it's rainy and cold today and most of you (at least in VA) are stuck indoors, I will give you all a second update for the day! Lucky you!First of all, good news and not so good news about some of our friends. Our friend Halle's latest MRI was today and it was clear. Hooray! Unfortunately, our friend Alex also had an MRI today and his is showing regrowth. He will probably have another surgery soon.These are both kids (and their families) that we met while in Texas. We will think positive thoughts for both of them!Also, Reese has given up her wheelchair and continues to improve each week. We are so happy that she is on the road to recovery. When Roger was at the clinic yesterday, he got our photo of Charlotte from the Kourageous Kids exhibit. We also got about 8 copies of the Kourageous Kids flyer that features a wonderful picture of Reese on the cover, a great story about her families journey with ASK, and then photos of all the other Kourageous Kids. What is really funny is that on the same page as Reese's story, there is a picture of Charlotte that was taken at the Head Shaving Party (wearing her "Bald Chicks rock" tee). I'm not sure why they used it unless they saw it on Reese's website and thought maybe it was a picture of her (???) but it's a great picture of CJ and a fun surprise for us. Charlotte was up around 5:30 this morning with the beeping of the IV pump. She was awake until about 10 AM. Watched TV for about 3 hours and then just pooped out again.Speaking of poop, a little extra laxative helped the girl along so that is one less worry for the day.I am expecting "Charlotte's Devon" any minute now for a visit so I'm hoping her almost 2.5 hour nap will have been enough to refresh her so that she can be a little bit social. Tomorrow there will be a Bake Sale at the West Park Ukrops (across from Costco on W. Broad Street). Ladies from Richmond Mommies (many of whom are also Romp n' Roll customers) have come together to bake and organize this fundraiser for Charlotte. There will also be Charlotte Bracelets sold there. Please come out from 1-4 PM (brave the weather) and support these fabulous ladies!One of the churches that my parents are involved in (Ebenezer Lutheran in Central Florida) is also holding a rummage sale/bazaar this Saturday for Charlotte. Funds raised will also be matched by Thrivent (a Lutheran Fraternal organization) so they are hoping to raise a good deal of $$. From what I understand, the community has really rallied around Charlotte and especially my parents at this difficult time. We have already been blessed by notes and gifts from members of this church and we are very grateful for their compassion and generosity. My brain keeps gearing up for the (as yet to be scheduled) MRI that will be coming our way in a few weeks. I am trying not to get too worked up about it but I know that this will be a very important scan that will most certainly set our direction for treatment for the next while. One day at a time...I guess that's all I have to say for now. It looks like it will be a cold and rainy weekend in VA so I hope everyone stays warm and dry. I can't believe we had to turn on the heat before October 15th!Rachel

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