So apparently if you go more than 48 hours between posts people start to panic a bit. In the last hour or so we have been getting a trickling of emails and phone calls saying, "Is everything ok?"
Yeah, it's ok.
As ok as it gets at this point.
First of all, I want to thank everyone for the support and kind thoughts following my Christmas post. I appreciate being able to express myself honestly and I appreciate all the support that we are feeling. I have said it before but it bears repeating: we feel strong through this because we know that we have a very soft cushion on which to fall and that cushion is YOU...our support network.
The Butterflyaway event at Romp n' Roll yesterday was small but successful. We will repeat it on January 2nd. I would like to repeat that this event is for anyone (families, friends, adults, kids) that has questions about dealing with death of a child, grief, and any other aspects revolving around Charlotte's passing. I believe that the January 2nd event is planned for 5 PM. Be there or be square!
We continue to have a slow and steady stream of readers. The days stay busy from between 6 AM (or so) until 8 or 9 at night (sometimes later). I asked Charlotte today if she enjoys the readings and she nodded her head yes.
Yesterday, the nurse came to change her dressing and reset the morphine pump. We noticed yesterday that she was having difficulty swallowing again and that her throat muscles seem tighter. We have also noticed a marked decrase in her muscle tone all over her body. The doctor recommended increasing the Atavan slightly but otherwise not much has changed. I think that in the last 24 hours, we have seen a slow but steady decline in her status. She is sleeping a lot. It's difficult to tell since she keeps her eyes closed a lot but I would say that she has only been truly awake for a few hours today. Lots of snoring noted. She also seems to feel more comfortable now in a more prone (rather than upright) position. This is all to be expected so neither Roger nor I are surprised. We are ready and we want this to happen as it will. Who knows....she could live another week or she could pass tomorrow. It's so hard to determine.
Dr. Archuleta is coming to visit again on Wednesday so we will see what his assessment is then. We have also called the acupuncturist to see if there is anything that she can do, even if it is just to make her a bit more comfortable. She is coming back tomorrow afternoon.
I have to relate another story that goes along with the "sometimes people just don't get it" theme. Roger went to the doctor this morning. No big deal. He was just due for a check up on his blood levels (cholesterol, etc.). While the nurse/tech was taking his blood, she was asking all kinds of questions like, "so how was your Christmas?", etc. Roger was trying to be polite and slightly vague but he was wearing his Bald Chicks Rock tee with Charlotte's picture and the lady still just wasn't getting it. Finally he said, "well, she has cancer so it hasn't really been the best Christmas." I still think she didn't get it. It's amazing how even some people in "healthcare" can be so clueless sometimes. In my opinion, he was far too polite.
Anyway, Roger and I have been having a Harry Potter marathon going for the past few days, watching all the old movies. Always a favorite for us so that has been enjoyable. We also used some gift cards to get some fun stuff at Barnes and Noble, including Who Framed Roger Rabbit. One of Roger's FAVORITE movies of all time.
So I guess that's it. I promise we will try not to keep everyone in the dark for more than 48 hours at a stretch...on to 2010. That's all I have to say.
Showing posts with label eating. Show all posts
Showing posts with label eating. Show all posts
Monday, December 28, 2009
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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