No, that's not my teeth chattering, although it is QUITE cold. It is definitely winter here in Virginia as I can see it is rather chilly throughout most of the country. These are days when I am grateful for my fireplace and a fairly well insulated home. We were blessed with a delivery of wood from Noah's Children! I can't stop talking about what a wonderful organization they are! They have gifted us with not only their medical and counseling expertise but bring frequent gifts of fresh bread, restaurant gift certificates for very important dates, the occasional hazelnut latte, and now a whole truckload of firewood! Amazing! We'll say it again: if you need a worthy cause to give your time, energy, or money too (besides CJSTUF), consider Noah's Children.
Charlotte is still here. Dr. Archuleta came to see her today and his latest assessment is that she is slowly changing. There is definite progression in her breathing, color, skin tone, etc. It's just a slow process and she keeps hanging on. He is hypothesizing that it should be anywhere in the next 24-48 hours. That would fit in with the 7-10 day window since her last bit of "substantial" nutrition. We did tell him that if he was wrong, after the 48 hour window passed, we are going on a trip to Aruba and HE can stay here with her till she finally decides to get those butterfly wings out.
We have tried every possible permutation in this vigil. We have sat at her bedside and held her, we have sung to her, we have given her quiet, we have left the room (and even the house), we have told her repeatedly that WE are ready for her to fly. She will go when she goes and there's no changing that. I feel that our life is at an odd standstill. I find it hard to do so many things, not out of grief but just because I feel like I can't move on in many ways until she finally passes.
Roger and I did go out briefly (together) yesterday and it was refreshing. Kathy L. and Kolbey stayed with her while we went out to lunch and ran a few errands. It was so nice to be out of the house and it really energized me. We had planned a date for earlier last week and it got delayed when her condition seemed to change and we thought we were on the verge. I'm glad we didn't procrastinate much longer as I was going a bit stir crazy.
I apologize to anyone who had hoped to read to Charlotte and did not get their chance. We decided to put the reading vigil on indefinite hold and I think that at this point it is probably finished. While I loved having the energy in the house, the contrasting quiet and relative lack of visitors has been refreshing in its own right. I think that the tone set in the house has been perfect in each case. Now is a time for more quiet. Thank you to everyone who was able to come (or Skype) in and thanks to those who continue to leave us notes of encouragement on Facebook or via email. We appreciate the constant "vigil" that has been created in support of us as well.
Plans are coming together for her memorial service and I will share some of that information with you now (especially for those of you that are planners). The service is scheduled for Saturday January 16th at noon at Blackwell Auditorium on the Randolph-Macon College Campus in Ashland. Rev. Ed Tracy (from St. James the Less) and Rev. Kent Rahm (from Trinity Episcopal in Fredericksburg) will be officiating. There will be a reception to follow at Duncan Memorial church (next door). Kim Thies and Meredith Hayes are heading up the organization of the reception. If you would like to help in any way, please contact me and I will give you their contact information. (I don't want to publish their phone numbers on our blog directly). They have spoken with us and know what our wishes are in terms of the reception, etc. and we are letting them run with it.
As a reminder, the service and reception will be as kid friendly as possible. We will have children's activities and space for the kids (art activities, etc.) as well as a few people who have already volunteered to watch kids during the service if needed. The service will hopefully have a very celebratory tone to it so please feel free to bring children if you are comfortable with that. Also, the dress code is PINK and/or PURPLE (no somber black allowed).
For anyone who is out of town or cannot make it, we are hoping to have the service videotaped so we will make DVD copies available as soon as possible. We hope that anyone who wants to can attend but we also understand that not everyone will be able to make it. Some of you have already said your goodbyes to dear Charlotte and your efforts have been recognized.
I think that is all the news I have to report. Thank you, dear friends and family, for your constant vigil. We love you!
Showing posts with label read to CJ. Show all posts
Showing posts with label read to CJ. Show all posts
Tuesday, January 5, 2010
Monday, December 21, 2009
Quite the day of reading...
It's no wonder that Charlotte is sleeping. Snoring actually. We had readers at the house at 6 AM this morning and aside from a few minutes break here and there, we had almost constant readers until almost 8:45 tonight! I can't begin to tell you what a wonderful energy it creates in the house. I love it! And thanks to all those who are bringing us healthy snacks (or wine).
Nothing new to report on the medical front for her. She continues to be awake for a few hours at a time and then sleep for a few hours. The meds have remained fairly constant. She doesn't talk much (every once in a while a word slips out) but she usually responds to yes/no questions and sometimes waves. Every once in a while her eyes open as well.
I actually went to work at romp n' roll this morning. I helped Emily with winter camp and it was great. Emily actually ran camp and I just helped on the front desk and was the "trusty assistant". It was so much fun to play tickle monster with the kids. They were a great group and I think it was a good return.
I also got to meet with Matt today. He was nice enough to come over to my neck of the woods and we had a good chat.
We did have to say goodbye to Aunt B today. She was very helpful during her stay here and I know she enjoyed her time with Charlotte. We will miss her a lot! (We always do.)
If you haven't been on our website lately, you should check out the photo page. It's Charlotte-palooza! We have slide shows from many of our recent adventures posted there. For many of our friends who do not have access to Facebook, this is your chance to catch up!
Many have asked if we have plans for the Christmas holiday and we don't. We just plan to stay home and "lay low". Visitors and readers (especially Skype-ers) are welcome. Just let us know.
By the way, the house is FULL of food (and I'm happy to say most of it is healthy). The fridge is FULL to capacity and the freezer has some good stuff in it too. Just want to make sure everyone knows we are grateful and we are being well-cared for.
Have a great evening, everyone.
Nothing new to report on the medical front for her. She continues to be awake for a few hours at a time and then sleep for a few hours. The meds have remained fairly constant. She doesn't talk much (every once in a while a word slips out) but she usually responds to yes/no questions and sometimes waves. Every once in a while her eyes open as well.
I actually went to work at romp n' roll this morning. I helped Emily with winter camp and it was great. Emily actually ran camp and I just helped on the front desk and was the "trusty assistant". It was so much fun to play tickle monster with the kids. They were a great group and I think it was a good return.
I also got to meet with Matt today. He was nice enough to come over to my neck of the woods and we had a good chat.
We did have to say goodbye to Aunt B today. She was very helpful during her stay here and I know she enjoyed her time with Charlotte. We will miss her a lot! (We always do.)
If you haven't been on our website lately, you should check out the photo page. It's Charlotte-palooza! We have slide shows from many of our recent adventures posted there. For many of our friends who do not have access to Facebook, this is your chance to catch up!
Many have asked if we have plans for the Christmas holiday and we don't. We just plan to stay home and "lay low". Visitors and readers (especially Skype-ers) are welcome. Just let us know.
By the way, the house is FULL of food (and I'm happy to say most of it is healthy). The fridge is FULL to capacity and the freezer has some good stuff in it too. Just want to make sure everyone knows we are grateful and we are being well-cared for.
Have a great evening, everyone.
Sunday, December 20, 2009
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.
Friday, December 18, 2009
Mama's Perspective
Roger did a really great job of capturing the events of the day but, of course, I have to add my two cents. It helps that it's after 2 AM and I'm just not ready to sleep. I'm kinda sleepy but I just have a bundle of nervous energy.
Fortunately, Charlotte and Roger are sleeping for me. As Roger mentioned, the latest IV doses of the meds (at 8:30) really relaxed her and put her "out". In fact, she was so relaxed at 12:30, I didn't give her another dose of the morphine or atavan. She's still snoozing and I go in to check on her every once in a while. I actually just changed a very wet diaper which is a good thing, I guess. The child hasn't eaten anything in over 30 hours!
I can't get over the perfect timing of everything. Our trip to Florida was so perfectly orchestrated. She was active, engaged, and enjoying herself up until the end! If our trip had been extended by even a few days, we would be in a totally different situation. Who knows...maybe she just was ready to let this happen to her now that the trip was over. The change in her since last Saturday is unbelievable. The old cocoon analogy is very apt. Her body is closing in on her and she is shutting down. I have never experienced this before (with a family member or a friend) and it is bizarre and fascinating.
I want to express how fabulous the Noah's Children staff have been. They are so matter of fact about the process but at the same time they are full of compassion and caring. I appreciate both. It must be an incredibly difficult job to deal with this on a daily basis and they handle it with such empathy, ease, and kindness. We are extremely grateful.
Seriously planning her memorial service today felt both good (that's the organizer and planner in me) and incredibly surreal (I am planning my daughter's memorial service!!!). At the same time, it was not nearly as SAD as I had anticipated. Further proof that I am ready in many ways for this next step. There is an emotional part of me that keeps losing it at every turn but there is a strong part of me that is ready to let her fly away. When the time comes, we will celebrate her life.
I have no idea how the reading vigil will proceed at this point. There is a very good chance that if you come to read or sing, CJ will be asleep. Remember that is OK. As Roger mentioned, the steady stream of visitors is a good thing. Looks like Richmond will be getting some winter weather in the next 48 hours so if you have signed up to read and find that you can't leave your house, please know that we will understand.
Finally, I want to send out another request from our Denver Network for a point person to help a very special family in the Denver area. I need a liaison who can work with this family (mom, dad, and twins who are 5). The one girl has recurrent Leukemia and the family is in need of fundraising help/donations, meals, and assistance with childcare (among other things). In the spirit of CJSTUF, let's find a way to get all those Denver folks who went to high school with Roger (or other friends/family in the area) to help a family in need that is just like us! If you can help, please email me at rachel@cjstuf.org You will not need to do all of the work but I want to have one person who can work with the family, determine their greatest needs, and then contact others in the Denver area (via this blog or other means) to help them the best way possible.
Thanks for your love and support.
Rachel
Fortunately, Charlotte and Roger are sleeping for me. As Roger mentioned, the latest IV doses of the meds (at 8:30) really relaxed her and put her "out". In fact, she was so relaxed at 12:30, I didn't give her another dose of the morphine or atavan. She's still snoozing and I go in to check on her every once in a while. I actually just changed a very wet diaper which is a good thing, I guess. The child hasn't eaten anything in over 30 hours!
I can't get over the perfect timing of everything. Our trip to Florida was so perfectly orchestrated. She was active, engaged, and enjoying herself up until the end! If our trip had been extended by even a few days, we would be in a totally different situation. Who knows...maybe she just was ready to let this happen to her now that the trip was over. The change in her since last Saturday is unbelievable. The old cocoon analogy is very apt. Her body is closing in on her and she is shutting down. I have never experienced this before (with a family member or a friend) and it is bizarre and fascinating.
I want to express how fabulous the Noah's Children staff have been. They are so matter of fact about the process but at the same time they are full of compassion and caring. I appreciate both. It must be an incredibly difficult job to deal with this on a daily basis and they handle it with such empathy, ease, and kindness. We are extremely grateful.
Seriously planning her memorial service today felt both good (that's the organizer and planner in me) and incredibly surreal (I am planning my daughter's memorial service!!!). At the same time, it was not nearly as SAD as I had anticipated. Further proof that I am ready in many ways for this next step. There is an emotional part of me that keeps losing it at every turn but there is a strong part of me that is ready to let her fly away. When the time comes, we will celebrate her life.
I have no idea how the reading vigil will proceed at this point. There is a very good chance that if you come to read or sing, CJ will be asleep. Remember that is OK. As Roger mentioned, the steady stream of visitors is a good thing. Looks like Richmond will be getting some winter weather in the next 48 hours so if you have signed up to read and find that you can't leave your house, please know that we will understand.
Finally, I want to send out another request from our Denver Network for a point person to help a very special family in the Denver area. I need a liaison who can work with this family (mom, dad, and twins who are 5). The one girl has recurrent Leukemia and the family is in need of fundraising help/donations, meals, and assistance with childcare (among other things). In the spirit of CJSTUF, let's find a way to get all those Denver folks who went to high school with Roger (or other friends/family in the area) to help a family in need that is just like us! If you can help, please email me at rachel@cjstuf.org You will not need to do all of the work but I want to have one person who can work with the family, determine their greatest needs, and then contact others in the Denver area (via this blog or other means) to help them the best way possible.
Thanks for your love and support.
Rachel
Wednesday, December 16, 2009
Tuf Stuf
It is really hard to watch this happening.
She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."
My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.
Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!
tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!
I'm gonna sign off because I just don't have anything else to say...
She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."
My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.
Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!
tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!
I'm gonna sign off because I just don't have anything else to say...
Reading to CJ: Helpful Hints
Hi Everyone! Just thought I would offer a little tutorial on the "READING to CJ" stuff as there have been lots of questions. The requests are coming in and we are looking forward to it. I may reiterate some things I posted earlier. To recap:
- Go HERE on the website to look at the calendar. The calendar is best viewed if you click on the tab that says agenda. If you click on the Reading to CJ Available item on each day, you will get detailed information about everything including a map with our address, etc.
- If people have signed up for a particular day or time OR if we have something already scheduled on the calendar, it is listed on that particular day.
- Go HERE (or click the Contact Us link on the website) to send a Read to Charlotte request. Please indicate the dates and times that you prefer as well as whether you would like to come for 1 or 2 hours.
- Remember that you do not need to read for the entire time. Singing, music, and visiting are also welcome. If you end up not staying for the entire time, that is ok too.
- Healthy children are welcome to come as well.
- If you are out of town and have access to a webcam, you can SKYPE in to read to Charlotte. Please send a request in the usual way but let us know that you will be SKYPing in.
- Also remember that CJ does not need to be awake in order for you to visit.
- Please do NOT bring gifts for us or for CJ. Your visit is a gift beyond measure. We do welcome healthy meals and/or snacks (freezer ready = even better!). You may bring a book/story of your own to share or pillage our library.
I think that's it for now. Thanks again for your support!
Rachel
Tuesday, December 15, 2009
Settling In
Our return trip was easy and relatively uneventful. At least the traveling part.
The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.
We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.
As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!
We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.
This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.
Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.
Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.
Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.
The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.
After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.
Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!
Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.
Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.
Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.
I think that's it for now. I will sign off and wish you good evening. It's good to be home.
The day before, Charlotte slept a lot and seemed to be getting more and more uncomfortable. She didn't seem to be in any acute distress but she just seemed to have a lot of discomfort. Her breathing rate has increased and we have noticed more difficulty with her ability to chew and/or swallow her food. She also seems to have more difficulty verbalizing her needs or responding to choices. All in all, Roger and I were noticing changes in her behavior and physical abilities. She can't really walk without trunk support anymore either.
We ended up spending the night at my mom's house instead of the condo. Roger and I got a little bit of sleep but I think it's still more sleep than my mom got. She stayed by her side all night. Knowing my mother, she probably slept little but I know that was time well spent as far as my mom was concerned. The morning dawned rather darkly (emotionally). It was difficult to say goodbye to my mom at the airport and I know it was very difficult for her as well.
As mentioned, the trip through the airports was pretty easy. Charlotte was a good traveler and slept/rested on most of the flights. She did grace us with a MASSIVE poop during the trip from Charlotte to Richmond. Fortunately it was a short flight and Roger took on the challenge of changing her in the tiny airplane bathroom. Kudos to him!
We were met by our limo driver in Richmond. It was funny because when he picked us up, he said that he had NEVER picked up folks at the airport before. Apparently he is an "event" limo driver (for proms, weddings, etc.). It was pretty clear that he'd never done this before since Roger had to actually ask him to help us with our bags. While I navigated CJ in her stroller with a backpack and two bags, the driver carried two small duffel bags, and Roger carried: the car seat, two bags, AND rolled the huge suitcase. So much for customer service. Anyway, it wasn't a big deal and we did enjoy our ride home. CJ conked out again as soon as we got in the car and stayed asleep till about 5:30 this morning.
This morning, I went to Target and Ukrops to get some groceries. Roger and I are on a serious "healthy eating" tear. We have indulged and imbibed way too heavily, not just in the last two weeks but in the last YEAR. I am done with feeling overweight and sluggish. So I filled the pantry and fridge with healthy foods. Hopefully it will last. We will encourage anyone that wants to make us meals to err on the side of healthy rather than comfort. Our mid-sections are in serious need.
Thankfully, we came home to a beautifully clean AND decorated house. Our friend Jan recruited some of her friends and they seriously reorganized our house in our absence. It was needed and we were grateful. Now I'm afraid I'm going to mess it up but it was nice to come home to a clean house. Plus there have been additional Christmas decorations added to create something of a festive atmosphere. I am very grateful for these angels.
Our afternoon consisted of a meeting with our team with Noah's Children. We were finally able to meet Dr. Archuleta, CJ's new primary care physician. Nurse Cathy and "the other Kathy" (our social worker) were also there. We shared our observations over the past few days as well as Charlotte's current medications and Dr. Archuleta had a chance to talk and interact with Charlotte a bit. By the end of the visit, we had discussed numerous options and ideas. While it is possible that some of her fatigue and symptoms could stem from "travel exhaustion", there was general consensus from all of us on the team that she has changed in the past two weeks (and most definitely in the last few days). Most likely, this is due to progression of the disease.
Dr. Archuleta wants to alter her steroid dose for a few days to see if it changes anything. In addition, he has given us a prescription for morphine (a very low dose) to hopefully regulate any pain she is experiencing as well as some of her breathing difficulties. We are discussing more and more what our options and plans will be when the time comes. Man, this sucks.
The team is returning on Thursday to reassess our needs and Roger and I will actually spend a good deal of time with Kathy to talk about some of our wishes for Charlotte once she passes. It is so surreal to have these kind of discussions. I can't even explain it. It's like an out of body experience.
After the team left, Charlotte watched some TV and hung out with Uncle Kolbey for a bit. I tried to get a few things done (catching up on emails, unpacking a few things, etc.) before he had to leave for his concert at the HAAC.
Aunt B (Roger's sister) arrived at about 5 this evening and Charlotte got to spend a little time with her before she fell asleep. Those of you following us on Facebook know that Roger was trying to find out if Santa came through on the firetrucks already (those of you who live in Hanover County know what I'm talking about). Well, apparently Santa's visit to our neighborhood was last night, while we were flying over Georgia. Not to be deterred, our network jumped to the task and Meredith contacted the fire station about making an extra stop for Charlotte tonight. They agreed to stop by our house before the rest of their run at about 6:30 tonight. Of course, Charlotte fell asleep about 15 minutes before they arrived!! I tried to rouse her a bit to say hi to Santa but I think she was a little bit out of it. I am still grateful to the Ashland Fire Dept. for coming by! Thanks to Meredith for her help!
Roger actually went to work tonight. There was a FACES event and Roger and our RNR standby Anna went in to entertain the troops! He's on his way back as I type this. I think he is definitely ready to get back into the RNR groove.
Regarding the Reading Vigil AKA Reading to CJ: A few of you have contacted me via the website and/or email about reading to CJ. I just want to clarify. I am going to work on the "official" schedule. There will be probably be times blocked out when we are NOT available for reading. Otherwise, pretty much any time is open. When you email me, please do so through the website and please let me know the best times for YOU and whether you expect to stay one hour, two hours, etc. I have not updated the calendar and/or website yet but will do so by tomorrow. If you have contacted me, I will try to get back with you by tomorrow as well. For now, I think we will keep the reading to between 6 AM and 10 PM but eventually, it could be a 24 hour thing. It may fluctuate based on her schedule. If you are from out of town and want to SKYPE in via webcam, that is a definite possibility. Also, CJ does NOT need to be awake. Please be ready to read to her even if she is asleep. That's part of the plan. It also does not need to be strictly reading. We welcome music, songs, or anything kind of "mellow". It could also be visiting time. Please do not bring any gifts for CJ when you come to read. Your visit is a gift beyond measure. You may bring a special story to SHARE but not to leave. We also have many books here at your disposal.
Before I close, I want to share something specifically for our Denver network: a family that we met in Houston lives in the Denver area. They just returned from a four month stay in Houston and they are in need of pretty significant assistance. I know that we have a great network of friends and family in the Denver area who would like to help us. Well, I would like to make this family the first "unofficial" recipients of the CJSTUF goodwill network. I need one person from the Denver area who would be willing to act as point person and liaison for this family. I think right now, aside from the moral support, they need meals, financial assistance (fundraisers?), and some help caring for their other daughter while they deal with their sick daughter's (probably terminal) illness. This point person would contact the family (with my help), find out their needs, and then network with the rest of our Denver network to assist in any way necessary. We may use this blog and our website as a vehicle to assist them as well. If you live in the Denver area and think this might be the job for you, please email me personally at rachel@cjstuf.org This family has no family in Denver to help them. Knowing how much we have benefitted from our local network, I can only imagine what having local assistance will do for them as well.
I think that's it for now. I will sign off and wish you good evening. It's good to be home.
Sunday, December 13, 2009
Headed Home Soon
This has been a good few days. On Friday, we took the little girls (CJ and Tricia) to see The Princess and The Frog. It was fabulous with lots of great music and humor for all ages. CJ was entranced and Tricia fell asleep halfway through (it was just at naptime). Friday night we ventured over to Orlando for the first night of Hanukkah (Chanukah/Honika/CCHHHHanukah). My high school pal Kim was hosting a Latke Party at her house and it was very fun. Roger and I even spun the dreidel a bit.
Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.
Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!
After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.
Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.
The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.
Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.
On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...
I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.
Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.
So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!
Saturday, we decided that CJ liked The Princess and The Frog so much that we went for a second time. CJ even wore her Cinderella costume this time. I think we all still liked it just as much (if not more). The music is still floating around in my head.
Then it was on to my mom's house where we were joined by most of our family: my mom and stepdad, mom's sisters (my aunts), their spouses (my uncles), cousin Sarah, her husband John, their daughter Tricia, and my godmother Mary Ann. The only significant omissions were Kolbey (currently holding down the fort in VA) and cousin Gina (stuck in Seattle). We missed them but it was a good time had by all. The eating was GOOD. My Aunt Shelley did 99.9% of the cooking and it was a feast full of all the comforts of home: turkey, ham, the "family recipe" stuffing, mashed taters, kahlua sweet potatoes, cranberry sauce, green beans (gotta have something green), and pumpkin pie and assorted sweets for dessert. YUM!
After that feast, we all retired to socializing. CJ fell asleep in Granny's arms and after a while we retired to the condo. I didn't sleep well last night. I've had mixed feelings about returning to Virginia. I have definitely missed home but this has been such an enjoyable vacation. Roger is pretty much ready to go back to work and will probably resume many of his RNR duties during the next week or so. I'm still not sure what I am ready for. There's multiple reasons but suffice it to say that I'm just not quite there. Anyway, eventually I did fall asleep only to be awakened by CJ calling me at about 4:30 AM. she was up in bed and her diaper had somehow come undone so the bedding was all wet. I changed her and got her out on the couch and then set to cleaning the bed linens. About 6 AM I woke Roger so I could get another hour or so of sleep. Then we headed back to mom's house about 8:30 for breakfast.
Breakfast was an encore of last night's dinner and nobody complained! There was plenty of food and it was really good. We're not a family limited by the "rules" of what is or is not breakfast food.
The family hung out for a little while longer and then the S. Florida contingent said their goodbyes. The day was sunny (finally) so mom and I took Charlotte out for a walk in the neighborhood. Shortly after our return from the walk, Charlotte indicated that she needed to poop and wanted to lie down on the floor (this has become a regular habit). We tried to "get things moving" with belly rubs and leg pumps but after a half hour, nothing was moving. We had a pending appointment (which I'll get to in a moment) so we put CJ in the car and headed out, hoping for the best.
Our pending appointment was a lovely venture on a boat. Our family friends, Don and Joanne Hawkins, had invited Roger, Charlotte, and I to take a ride on their boat on the intracoastal so we headed down to Ponce Inlet for an afternoon journey. In true form, Charlotte fell asleep on the way there. She actually stayed asleep for the whole boat ride(!!) Roger and I enjoyed the experience, though. It was lovely to hang out on this boat with such lovely people. The weather was perfect and the scenery was gorgeous.
On the way home, Charlotte stirred a little but she definitely did not seem comfortable. We got back to my mom's place and tried to encourage "the poop". She laid on the couch for a while, dozing off and on. Finally, Roger held her for a while and she let go. It was a MASSIVE poop. Then she fell asleep again. She's been asleep off and on since about 2:15 PM (it's now 8:30) and she doesn't seem too happy. Not sure what she wants...
I think this is where we are headed. I feel like we've taken a turn in the process. Not sure where things will go from here, but as Roger and I have said before, our vacation could not have had better timing. So tomorrow we head for home. We will leave for the airport about 1 PM and we should arrive in Richmond (assuming all will run according to schedule) about 9:45 PM. SUPPOSEDLY a limo will be waiting for us upon arrival. I think even with all the gifts we've accumulated along the way, we are only going home with one extra bag and maybe one box mailed to the house.
Before I forget, a few "Read to CJ" requests have come in. I have not really responded to them yet but that will be first on my agenda when we get back. If you are one of the many who expressed interest in reading to our girl, please go to our website and click on the CONTACT US link. You can send an email directly with your availability or desired dates to read to our girl. We will start this on 12/16. We don't have many definite plans other than home health visits so we are probably pretty open. Visits from kids are welcome too.
So I bid farewell to our FLA friends and give thanks for the wonderful hospitality we have received from friends and family while we were here. To our Virginia friends: see y'all soon!
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