I'm Spent!

It's been difficult for me to get moving today. That might be why it's already past 9 and I'm not showered or out of my PJ's yet. I feel like the Energizer bunny has finally lost her charge. I'm spent! (surprised???). The rain and allergies don't help. Anyway, fortunately, I just have some "office work" to do today. It DOES have to get done but at least I can work at home. More glorious rain coming down today. I have a beautiful view of my azaleas and dogwoods in the backyard as the rain falls. Very pretty.

Charlotte came home last night and we had a quiet family evening. She fell asleep before 8 PM (and slept through till almost 8 this morning!) She went home not needing any oral medications (yay) as long as she continues with a regular pooping regimen. We go back to the clinic tomorrow for more blood draws just to check numbers. Her numbers are low but stable.

Uncle Kolbey comes home tonight so we will be picking him up from the airport. I think he will watch her tomorrow morning but just a reminder that we have a few other Care Calendar needs coming up at the end of this week and next week. Please sign up to help if you can.

Another reminder about the "Living With Cancer" dinner this week at the Elko Community Center. This is an all-you-can-eat feast from 2-5 PM with all proceeds going to Charlotte. Our neighbor's daughter organizes it every year and this year they selected Charlotte as the beneficiary. Tickets are $10 for adults and kids 7+. We are selling tickets at Romp n' Roll and I think you can buy them the day of.

Thanks to everyone for the continued help and moral support.

Rachel

Care Calendar has Been Updated

Needs to watch Charlotte over the next two weeks have been posted on the Care Calendar. Please go there if you think you can help. There are some morning and evening needs. You can also email me if you can do some of the time but not all. Some of the timing is flexible.
Instructions for accessing the Care Calendar (you need a code) are in the RESOURCES section of this Caring Bridge site.
I think I have also figured out how we can post a calendar with fun-raising events. More on that soon. Gotta go teach...
Rachel

Update:
Charlotte is sleeping. I hope that's not a bad sign but my kid never naps! She had a busy day,though. Roger took her to PT and she did very well. The therapist was very impressed with her progress and she got to ride the tricycle.
Then it was off to lunch with her "boyfriend" Wyatt at chick-fil-a. She actually climbed up the play area and went down the slide. She hasn't been able to do that for a while. We also ventured over to Romp n' Roll for some playtime. Needless to say, when she got home, she went to snuggle with Daddy and CRASHED.
Oh, and she POOPED this afternoon. Hooray for poop.
That's all the news to report so far.
Rachel

Care Calendar in use

Quick post:Care Calendar has new childcare needs posted for the next week. Let us know if you can help. Information for signing on to the Care Calendar can be found in the LINKS section of our Caring Bridge site. Charlotte had a great visit with Dana and Hayden Massey today. Her other boyfriends are gonna be jealous, I think!Getting ready to have another great Juanita Bonita meal. It smells great!Charlotte moving around a LOT today, especially that left side! Good job!Gotta run....

Charlotte's busy day

Did you miss us?Sorry for the delay in any kind of update. It was very good to have Roger home again. We both have had busy but less than satisfying days. Just very little time in which to get very much done. The spring session at Romp n' Roll is fast approaching and we have much to do to get ready. Unfortunately, Roger hit quite the snag in his plans. Charlotte's OT appointment went very well today but she started complaining that her chest was hurting. Her line looked a little red so Roger finally got her in to see the pediatrician (apparently that flu bug going around has all the Peds very busy!). They were concerned that there was what looked to be the beginnings of a small infection so they prescribed another antibiotic and sent Roger home to change the dressing (again). I think it prefers honey mustard to ranch.Bad joke rachel...Anyway...thank goodness for the grandparents being here to help while Roger and I got things done at RnR. Looks like Aunt B. will be coming back in a little more than a week (YAY!) and will be able to stay almost 10 days. Then it won't be long before Granny (my mom) comes to visit. In the meantime, I know we have a few days where we might need some assistance but I have to check with Roger on the times. Be on the lookout in the next day or so for the "Care Calendar" to have a few updates. Many have asked about our food/freezer needs. Right now, we have stayed well fed thanks to Juanita Bonita's home cooking. I just want to take a moment to say what a domestic goddess she is! She makes fabulous food (and almost always from "scratch") and has always been ready with "take away" meals for me or Roger before we go to work for the day. She also has kept the house very clean (which we always proceed to "undo" in the course of minutes...) and the laundry updated. We have also used a few of the meals in the freezer. There are more there but the freezer is about "half"(?) full. (I'm guessing). Anyway, what I'm trying to say is while we are not in desperate need, if the Spirit moves you to make a dish to place in our freezer, we won't refuse it. :-)Charlotte's motor skills just continue to improve. She motored around the house tonight and asked to help as I cleaned the fish tank. Abby Cadabby keeps swimming away and seems pretty happy even though the NH3 levels keep reading at "caution" (which is just a step above "healthy" so I guess it's ok). I've changed the water 25-30% almost every day and used the ammonia drops. She seems happy and active so I guess we're ok. Charlotte helped me put clean gravel/marbles in the bottom of the tank and laughed at Abby's antics. She is also using her left hand much more. We had a good time singing a version of "Where is Thumbkin" and trying to make those fingers move. Plus, she has given numerous "high fives" with her left hand. That is something she couldn't even attempt a week ago so that is major progress!She is now enjoying the Scholastic Storybook DVDs sent by Granny. It's a collection of over 100 classic stories (Chicka Chicka Boom Boom, Curious George, Strega Nona, etc.) animated in short vignettes with music. Very "Reading Rainbow" style. She loves them! Keeps her entertained as she winds down for the night and lets me type an update. And did I mention that it's NOT DORA. Don't get me wrong, Dora is just fine and I know it's one of her favorites. And I love all the Dora "goodies" that have come her way...but a little goes a VERY long way as far as I'm concerned and if I hear "Where are we going (clap clap clap)?" one more time tonight I'm going to tell Dora to "Vamonos"!Speaking of Vamonos, I will sign off for tonight. Very tired and got another long day tomorrow.Rachel

Just one PS...1. I'm still working on thank you's for all the gifts, food, etc. that we have received. Please know if you have supplied us with SOMETHING in the last month, your gift has been received gratefully. I swear those "personal" notes will go out soon enough...2. A special THANKS to those who have contributed to Caring Bridge in the "Tributes" section of this webpage as well as to our Care Calendar. These tools are an amazing miracle for us (in so many ways) and I am grateful to the person/people who created them as well as those who keep it going.OK. I'm done...I swear...

Med. residents

Pretty rough night for both me and Charlotte. She didn't settle down until way past my bedtime and then was up again about 4 am complaining of pain and HUNGRY. She ate a whole bowl of cereal and milk. Complaining of more pain even after the T3. Just as nurse Princess was about to give her some morphine, she fell asleep so we just let her sleep. Of course, then the litany of med students/residents came in starting at 6 AM. Three of them....all wanting to do the same thing, ask Charlotte the same questions, and ask me the same questions. All spaced about 20 minutes apart. Sheesh.
My biggest concern right now for her is this head pain. While I really want to go home tomorrow, I would like to think that her pain management was more...managable. I guess we will see what the doctors say today.
I must get ready for the day. Big meetings and work...where's my coffee???

Let's get it Moving

Kinda in limbo land right now. Doctors have visited (while I was out this morning) but no real word on a release date/time. More and more we are feeling like the pain is due to actions in the belly, not the head. Her belly is SO distended and now she is telling us that her bottom hurts. Poor thing! We have tried a lot of things including miralax, suppositories, squeezing play doh and her animals, eating apples and drinking juice, the WORKS. Doctors trying to problem solve about next step.
She did get up and about a lot today, including a visit to one of the playrooms. She put together a penguin puzzle with help and we did some play doh fun.
Resting now and trying to push that poop out.
Rachel

I love how poop is such a borderline taboo thing to talk about even though we all do it one way or another. We don't want to acknowledge it when things are working smoothly but boy, does life stink (literally and figuratively) when it doesn't! Charlotte is showing us that right now.
So let's embrace our poop! Let's become one with our poop and show that world the power of our excrement!!! Go to your windows, open them up, stick your heads/butts outside and shout/fart to the heavens, "I'm constipated and I'm not going to to take it anymore!!!"
You may think I have lost all sense of decency but I actually want to minimize people's aversion to thinking about this. I believe strongly in the power focused at us at the moment and I would love everyone to focus their thoughts, prayers, meditations, yes, even your visualizations, on Charlotte's plight of poop. She's very unhappy.
Thanks,
Rog


Love Roger's most recent post. Ah, the power of the poop!
The bad news is that it doesn't look like tomorrow is our "release date". I think we have been denied our parole another day. According to nurse Traci (who I think is AWESOME since she knows all the words to all the Yo-Gabba-Gabba songs and I don't), they are going to start her on a diuretic tomorrow that will try to relieve some intracranial pressure and, of course, we are still working on the digestive actions.
So it looks like we will

On a more serious note: I just read Arlene Unger's post and I wanted you to know some about her late husband, Bruce.
First off, he was a brilliant man and unafraid to question anyone who he thought was giving him the business yet at the same time, he was affable enough to make you glad to come clean to such a nice guy. I loved sitting with/near him at faculty luncheons, when I could find a seat, because he was always good for a thought provoking, if slightly verbose, grilling of the speaker! :-)
He also LLLOOOVVVEEEDDD oldies and had a vinyl record collection to die for! A few times he came into my radio show at WHAN and did an oldies segment for R-MC WAVE Radio. He also guest lectured for my History Of Rock class at R-MC and I learned about as much as the students and completely stole his PowerPoint presentation (with his blessing, of course)!
It seems ironic that a brain as powerful as his was the location of what felled him. Maybe not. Maybe in a weird way it was fitting. Doesn't make it any more pleasant that his life ended that way. Maybe I'm just rationalizing what I don't understand. Been doing that a lot lately.
Here I am trying to make you think I was best friends with him or something but I actually only knew him for a few years. He made you feel that way. I really liked him.ll be here a while longer. We will continue to "make do" and will continue to pursue all her therapies. Keep thinking non-constipating thoughts. Think of flow...free flow...for her head and her belly....
That is all...


Thanks for the support regarding all the constipation. We do know that the combination of pain meds, multiple anaesthesias, a basically sedentary lifestyle for three weeks, and other issues have all contributed to her problems. We have tried some dietary options as well but my personal opinion is that if an enema (or in the case of some days multiple enemas) isn't working, we have some serious trouble! Maybe we can use some of Roger's flax seed stash to make some cookies/muffins.
She is in a lot of pain right now but did eat a good dinner (ravioli, broccoli, peaches and coco-lax milkshake!)
Gotta go distract the princess as best I can.

Announcing the Care Calendar!

We have launched our Care Calendar site. There is not much there right now. However, when we get home, we will fill in more regarding our domestic needs. We are expecting we may need help with housekeeping, getting Charlotte to/from therapy appointments, hanging out with her from time to time, various errands, and possibly meals down the line.
For right now, as we are on "standby" for our hospital departure, our needs are pretty simple: we need some folks to hang out with CJ at MCV in order to give her parents some relief. At this point, we have only requested help through Friday but will update things as we know more about our hospital stay.
To access Charlotte Reynolds's personal CareCalendar site,
visit http://carecalendar.org/logon/11844 and enter the following
information in the appropriate spaces:
CALENDAR ID : 11844
SECURITY CODE : 1806
If you have any questions about this calendar, you can also contact Roger or myself directly via email or our various phone numbers.
Thanks and keep checking often!
Rachel