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.


  1. So glad to hear you are home but devastated with the issues you have to face upon arrival. I definitely want to be on the reading list and I am all about healthy meals so maybe I can help in that way too! We think of you guys non stop and hope that you can find some peace in the tough days ahead.

    Hugs and love
    The Klauer Family

  2. Am so thankful that you are all home safely. Know that the prayer warriors in Brandon continue to lift you each up. Love to you each, Barbara Jean

  3. You are a wonderful writer, Rachel. I know that little Charlotte is proud to have a Mommy who can write about her with such love, insight and honesty. Thank you. Randall


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