Let's pick Easter Island time today...
So Happy Passover everyone. And a blessed Holy Week.
And Happy Wednesday because that is the day on which God created LOST!!!
I digress...
Thanks to those who have responded either via the Guestbook or privately with your words of comfort, support, empathy, etc. after my last post. Much appreciated!
All in all, except for the lack of sleep it was a decent and busy day. We had a great visit with Reese and her mom before their visit to the clinic today. Reese was very talkative, happy and a joy to see. Love those Strawberry Tights! THEN we had a great visit from our new friend Cheryl and her daughter Denise. They live in Ashland and we have met through mutual friends. Cheryl is heading up what I think will be a GREAT benefit concert for Brain Tumor Awareness month (MAY) at Ashland Coffee & Tea. Her daughter is a survivor and came to visit Charlotte today. She is almost 16 so Charlotte now has a survivor "buddy" who can tell her all about being in the hospital, share a story or two, and maybe even babysit sometimes. Charlotte was excited to meet her and that was a great addition to our day. It didn't hurt that Charlotte also got a new monkey beanie baby out of the deal.
Also thanks to Cheryl for being a person to lean on. She's been there and is (mostly) on the other side. That's comforting!
MUCH thanks as well to Emily for bringing us lunch today. So good to see her 'cause it's been a while. BIG HUGS! Lunch was wonderful!
Daddy came to visit this morning after picking up our taxes from the accountant and before Romp n' Roll. We had a fun time as always. Between all her visitors, Charlotte also did some painting in the playroom, took a few walks (practicing her princess wave), and watched some videos and read some stories.
We are still struggling with the oral meds. She gets herself so worked up and then proceeds to vomit afterwards. Which basically nullifies the value of the meds. Not to mention losing any valuable nutrition she may have taken in. We're still working on this. Popsicles seemed to work for a while but even with ALL her favorites available (chocolate, cookies, milkshake, m&ms, you name it...) the bribes don't work. Where's a good behavior analyst when you need one? (Oh, yeah, right...that's supposed to be me. Oh well.)
She did poop this evening (hooray for poops) and we are completing Day B tonight so we are still on track for a Friday discharge.
I received word that BRACELETS ARE IN! I will be getting a delivery from Melissa tomorrow and we will work on getting them distributed to those who want them. Yes, there will be some at the party on Friday. Yes, Barclay, you will get as many as you want. And yes, some will go to FLA with my mom after they leave next week.
I guess that's all I have to report. I am going to grab a beer, pop some popcorn (non-microwave of course!) and get ready to get LOST...
Don't even try to call me between 9 and 10 PM. I will NOT answer the phone.
Rachel
Showing posts with label bracelets. Show all posts
Showing posts with label bracelets. Show all posts
Wednesday, April 8, 2009
Thursday, March 12, 2009
Charlotte has Rebounded and Looks Great
6:51 AM
Two things:
First: Time Magazine has a very interesting cover story about insurance this week and the author, Karen Tumulty, was interviewed in NPR's Fresh Aire yesterday (Wed. March 11). It was a great look into the problems some (many) people are having in dealing with insurance companies. This is NOT our experience as Humana One isn't denying us coverage but the mindset leaches over the boundaries. The second story is good too. Here's the link to the broadcast/podcast:
http://www.npr.org/templates/rundowns/rundown.php?prgId=13
Next, I know this is extremely short notice but would any Caringbridge families be interested in a free Romp n' Roll Virginia Center playdate on Sunday? I'll open up the time between 2-5pm for any CB kids. It will be like a low-key open house and we'll have the art/party room open for a place to sit/have snack if you like.
Please answer on the guestbook or call the store at (804) 249-1001 to let us know if you're coming so we can get some idea of what kind of numbers to expect.
Thanks and take care,
Roger
4:18PM Update
We are in the homestretch of round 1. Charlotte has been doing very well and all the doctors and nurses are happy with her progress. After that little bout of grumpiness and poor color, she has rebounded and looks great. She is currently getting her last chemo medication on this round and should be released sometime tomorrow (hopefully in the morning). She has had a busy day, playing with some other kids on the unit, working with the preschool teacher on cutting and coloring skills, and taking lots of walks or rides in the stroller. She is currently being annoyingly adorable and talking her head off!
We are still trying to sort out the insurance mess. Before I call the insurance company and accept the "out of network" services, i'm trying to get some ducks in a row and make sure some of the advocates who are working with us send us in the right direction.
I finally read the TIME magazine article that Roger referenced today and it certainly echoes some of our experience. I know many people on the "conservative" end of the political spectrum who want to talk about personal responsibility and lack of government control in things like this, but what is clear in this piece is that this has nothing to do with any of the above issues. People get health insurance thinking that they are being responsible only to find out that their coverage basically only helps them as long as they are healthy. Somehow I don't understand the purpose of health insurance for healthy people. We definitely have created a system that reinforces chronic or acute care over wellness care. It's very frustrating.
Anyway, I digress...
Roger and I have looked at our calendars for the next two weeks to see where we might have needs.
To give everyone an update: food-wise, we are a-ok. We either have had meals come in this week or know that we have some more coming next week so I think the Reynolds pantry/freezer will be well-stocked for the next little while.
We also had the services of a housecleaner donated to us and will be utilizing that next week so the house will be in good order.
I know we will have to schedule lots of doctor and therapy appointments in the coming weeks. For the most part Roger and I have worked out our schedules to always have one of us with her. The main exeception is on Tuesday mornings. For the next two Tuesdays (17th and 24th) until my mom gets here, we will need someone to watch Charlotte at our home from about 8:30 (ish) until about 1:30 (ish). If you can help with this, please sign up on the Care Calendar. If you need a reminder or help accessing the Care Calendar, please go to the LINKS section of our Caring Bridge page. A link to the webpage is there as well as the username/password codes that you need in order to access the site.
Aside from that, we do welcome visits from friends, family, and other kids. While we do not need to take out of the ordinary precautions, her immune system will be compromised, especially in the next week so please do not visit us if you have recently been ill or have had a household full of unhealthy people.
I think we are reaching the end of our current batch of bracelets and Melissa will be placing another large (1000!) order soon. This means that we have sold almost 300 bracelets in just a few short weeks! WOW! Her bank account is growing and I just had to write a few checks this week for medical bills that have begun to "trickle in". We are so grateful for all the donations. The money, gifts, gift cards (many times for restaurants or groceries), clothes, and thoughtful cards are all so appreciated. Again, if you haven't received a personal thank-you from us yet, you should soon and I really appreciate your patience!
The 1000 bracelets should tide us over for a while, I think! I spoke with Barclay DuPriest at the RMC bookstore yesterday and she has asked for a large quantity from our next shipment so they can be a central distribution site for the Ashland area. More on that to come soon!
Before I sign off, I want to mention the "Secret Angel Stitchers". I had never heard of this organization before, but last week we started to receive random cards in the mail from this group. Somehow we were nominated and these ladies send machine stitched angels, animals, and other sweet tokens with a personalized card. These people send their gifts anonymously and pray over each token. We have received gifts from as far away as Australia and every day when i get the mail there are 1 or 2 more. So sweet! For more information on their organization, you can go to www.secretangelstitchers.com
Thank you to whoever sent in the nomination. We feel more than blessed!
HUGS to everyone,
Rachel
Two things:
First: Time Magazine has a very interesting cover story about insurance this week and the author, Karen Tumulty, was interviewed in NPR's Fresh Aire yesterday (Wed. March 11). It was a great look into the problems some (many) people are having in dealing with insurance companies. This is NOT our experience as Humana One isn't denying us coverage but the mindset leaches over the boundaries. The second story is good too. Here's the link to the broadcast/podcast:
http://www.npr.org/templates/rundowns/rundown.php?prgId=13
Next, I know this is extremely short notice but would any Caringbridge families be interested in a free Romp n' Roll Virginia Center playdate on Sunday? I'll open up the time between 2-5pm for any CB kids. It will be like a low-key open house and we'll have the art/party room open for a place to sit/have snack if you like.
Please answer on the guestbook or call the store at (804) 249-1001 to let us know if you're coming so we can get some idea of what kind of numbers to expect.
Thanks and take care,
Roger
4:18PM Update
We are in the homestretch of round 1. Charlotte has been doing very well and all the doctors and nurses are happy with her progress. After that little bout of grumpiness and poor color, she has rebounded and looks great. She is currently getting her last chemo medication on this round and should be released sometime tomorrow (hopefully in the morning). She has had a busy day, playing with some other kids on the unit, working with the preschool teacher on cutting and coloring skills, and taking lots of walks or rides in the stroller. She is currently being annoyingly adorable and talking her head off!
We are still trying to sort out the insurance mess. Before I call the insurance company and accept the "out of network" services, i'm trying to get some ducks in a row and make sure some of the advocates who are working with us send us in the right direction.
I finally read the TIME magazine article that Roger referenced today and it certainly echoes some of our experience. I know many people on the "conservative" end of the political spectrum who want to talk about personal responsibility and lack of government control in things like this, but what is clear in this piece is that this has nothing to do with any of the above issues. People get health insurance thinking that they are being responsible only to find out that their coverage basically only helps them as long as they are healthy. Somehow I don't understand the purpose of health insurance for healthy people. We definitely have created a system that reinforces chronic or acute care over wellness care. It's very frustrating.
Anyway, I digress...
Roger and I have looked at our calendars for the next two weeks to see where we might have needs.
To give everyone an update: food-wise, we are a-ok. We either have had meals come in this week or know that we have some more coming next week so I think the Reynolds pantry/freezer will be well-stocked for the next little while.
We also had the services of a housecleaner donated to us and will be utilizing that next week so the house will be in good order.
I know we will have to schedule lots of doctor and therapy appointments in the coming weeks. For the most part Roger and I have worked out our schedules to always have one of us with her. The main exeception is on Tuesday mornings. For the next two Tuesdays (17th and 24th) until my mom gets here, we will need someone to watch Charlotte at our home from about 8:30 (ish) until about 1:30 (ish). If you can help with this, please sign up on the Care Calendar. If you need a reminder or help accessing the Care Calendar, please go to the LINKS section of our Caring Bridge page. A link to the webpage is there as well as the username/password codes that you need in order to access the site.
Aside from that, we do welcome visits from friends, family, and other kids. While we do not need to take out of the ordinary precautions, her immune system will be compromised, especially in the next week so please do not visit us if you have recently been ill or have had a household full of unhealthy people.
I think we are reaching the end of our current batch of bracelets and Melissa will be placing another large (1000!) order soon. This means that we have sold almost 300 bracelets in just a few short weeks! WOW! Her bank account is growing and I just had to write a few checks this week for medical bills that have begun to "trickle in". We are so grateful for all the donations. The money, gifts, gift cards (many times for restaurants or groceries), clothes, and thoughtful cards are all so appreciated. Again, if you haven't received a personal thank-you from us yet, you should soon and I really appreciate your patience!
The 1000 bracelets should tide us over for a while, I think! I spoke with Barclay DuPriest at the RMC bookstore yesterday and she has asked for a large quantity from our next shipment so they can be a central distribution site for the Ashland area. More on that to come soon!
Before I sign off, I want to mention the "Secret Angel Stitchers". I had never heard of this organization before, but last week we started to receive random cards in the mail from this group. Somehow we were nominated and these ladies send machine stitched angels, animals, and other sweet tokens with a personalized card. These people send their gifts anonymously and pray over each token. We have received gifts from as far away as Australia and every day when i get the mail there are 1 or 2 more. So sweet! For more information on their organization, you can go to www.secretangelstitchers.com
Thank you to whoever sent in the nomination. We feel more than blessed!
HUGS to everyone,
Rachel
Wednesday, March 11, 2009
Discharge Pushed to Friday
Charlotte has taken a definite turn and it's probably not for the better. Aunt B was with her for most of the day (THANKS!) while Roger and I worked and while she seemed to have a really good morning, her afternoon/evening seemed to go slowly downhill. Her "color" is much paler and we are noticing dark circles under her eyes. Definitely the toll of the medication, I'm sure. As the evening wore on, she just kept getting grumpier and grumpier and I am sure she is not feeling her best.
Her stay in the hospital has been pushed to probably Friday (who knows???). Apparently I was a little off on the protocol and while the 5 day stay is an estimate, they can't do the 3 day chemo cycle that she is on now until the methotrexate reaches a certain level in her urine and that can vary dramatically in people (mainly due to metabolism). They said that in some kids, it cycles through quickly. In others, it can take over a week just for the methotrexate to cycle out so I guess we're doing "ok". She has completed her "A" day and we are on to "B" and "C" tomorrow and Thursday. So let's hope for a Friday release?
Meanwhile, Charlotte's parents are both fatigued (to say the least). Speaking of a "cumulative effect", I think it's just trying to keep everything in balance including work, the inevitable lack of sleep, and worry for Charlotte's well being. We are hanging in there and appreciate all the support.
I haven't checked in with Melissa lately but I know the Romp n' Roll stash of pink bracelets are almost gone (less than 10 left?) so I know we will have a new order pending soon.
Meanwhile, Aunt B has been cooking like a wonder woman and helping out a lot. We really appreciate it!
Gotta go get some sleep.
Rachel
Her stay in the hospital has been pushed to probably Friday (who knows???). Apparently I was a little off on the protocol and while the 5 day stay is an estimate, they can't do the 3 day chemo cycle that she is on now until the methotrexate reaches a certain level in her urine and that can vary dramatically in people (mainly due to metabolism). They said that in some kids, it cycles through quickly. In others, it can take over a week just for the methotrexate to cycle out so I guess we're doing "ok". She has completed her "A" day and we are on to "B" and "C" tomorrow and Thursday. So let's hope for a Friday release?
Meanwhile, Charlotte's parents are both fatigued (to say the least). Speaking of a "cumulative effect", I think it's just trying to keep everything in balance including work, the inevitable lack of sleep, and worry for Charlotte's well being. We are hanging in there and appreciate all the support.
I haven't checked in with Melissa lately but I know the Romp n' Roll stash of pink bracelets are almost gone (less than 10 left?) so I know we will have a new order pending soon.
Meanwhile, Aunt B has been cooking like a wonder woman and helping out a lot. We really appreciate it!
Gotta go get some sleep.
Rachel
Wednesday, March 4, 2009
Insurance Dance Continues
Charlotte got the catheter this morning and Rachel says she was very brave. She also got the baseline set for her hearing (let’s hope it doesn’t change much).
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
The insurance dance continues. Now we come to find out that ALL the chemotherapy is considered “out of network.” Rachel only learned of that by chance from talking to Dr. Kahn. So Rachel was on the phone with Yolanda from Humana Benefits trying to figure things out. At one point Yolanda (very politely and trying to be helpful) says, “You could just go to St. Jude.” There is no “just going to St. Jude.” I’ll tell you what, if we do go there, I’m camping out at the Elvis Presley Archive. (Anybody know someone in Memphis who needs a singer?) There are other possibilities as well. I'll let Rachel update you on all that.
Dr. Kahn has stated that he will start filing papers to get this cleared up but it takes a very long time to process so unless we can somehow get it expedited, we won't be starting chemo tomorrow. Which means that the whole catheter thing was unnecessary.
Keep writing those letters and send the positive thoughts our way. Our frustration level is rising.
Got some Styrofoam peanuts and bubble wrap and I understand there are some materials on the way. Thanks everyone.
Charlotte Bracelets are in! We will probably have some at the front desk but there are so many ordered, we will most likely have to put in yet another order! This time for 1000!
Volunteer needed!
This Sunday, Bon Secours is having one of their baby expos at Memorial Regional Hospital. With all the things going on in our lives, both personally and professionally, I was just going to let it happen without us (me) but then remembered our amazing network. So I thought I’d put out the word.
The commitment will be from about 2pm-5pm at Memorial Regional on Meadowbridge Rd off of 295. Building 1.
Please email us or call my cell if you are interested (540-220-4922). Thanks a ton in advance.
Roger
Monday, February 16, 2009
We apologize for any delay in the updates. Between busy days and fouled internet connections, it's been quite an adventure.
She did not go to sleep easily last night and was up at 4 AM this morning. She kept complaining that her "bottom" hurt and we are quite sure that thanks to all her antibiotics, she has a yeast infection. We got her some lotrimin and are trying to push the yogurt but that's not her fave.
She took a small nap after her early morning adventures and then had a fun visit from Holly and her three kids! Then Grandpa and Juanita Bonita arrived and she has been cheery ever since. We have decorated her My Little Ponies with bows and barrettes, colored pictures, and listened to stories.
Speaking of listening, tune your radio dials to 89.7 FM tomorrow morning at 7:30. We have been invited to appear on American Family Radio for an interview. One of the station managers knows the Barnett family and used to work for Romp n' Roll. They have been following our story and want to have us on the air.
Tomorrow should be a busy day at Children's Hospital and I have to stop by the DMV to get our new handy-dandy handicap sticker for the car.
Gotta go answer some emails...
Rachel
Feast or famine...I was just going to post this when Rachel posted hers. Sorry for any redundancy.
Had about as good a morning as we've had yet. Rachel had to get up with her early this time and is probably about to fall over.
Charlotte looked great this morning and has only needed a small amount of Tylenol the last couple of days.
We had a house full of people today including Uncle Kolbey who was officially watching her, and Holly Bingham and the "triplets" (not really triplets but might as well be!) who brought their amazing energy into CJ's space. Thanks a lot for visiting and sorry I had to abandon you.
Dad and Juanita Bonita are here and brought the case for the foamie hockey sticks! YAY!!!
I've been visiting other Caringbridge sights and I'm just amazed at the range and scope of situations. There are amazing stories of strength, courage, and recovery and those (mostly parents and spouses) who maintain the site in memorium long after the person has passed. And there are those of us in between just hanging in there.
I can hold my baby and let her fall asleep on my lap, like she did this morning, and for that I am so grateful. Others have not been as fortunate. Please keep the energy flowing.
Thanks,
Rog
Just a quick note to let folks know that you can go to the LINKS section of our Caring Bridge site for more information about how to get bracelets and how to access our Care Calendar. Since the grandparents are in town, we don't have a huge need for the Care Calendar right now, but we will try to let you know when needs have been posted.
I think we are "officially" out of bracelets although there are a few floating around at Romp n' Roll or at our house. More have been ordered and should be in soon. We have gone through 100 in about a week!
Must sign off for the evening as there is a big day ahead!
Rachel
She did not go to sleep easily last night and was up at 4 AM this morning. She kept complaining that her "bottom" hurt and we are quite sure that thanks to all her antibiotics, she has a yeast infection. We got her some lotrimin and are trying to push the yogurt but that's not her fave.
She took a small nap after her early morning adventures and then had a fun visit from Holly and her three kids! Then Grandpa and Juanita Bonita arrived and she has been cheery ever since. We have decorated her My Little Ponies with bows and barrettes, colored pictures, and listened to stories.
Speaking of listening, tune your radio dials to 89.7 FM tomorrow morning at 7:30. We have been invited to appear on American Family Radio for an interview. One of the station managers knows the Barnett family and used to work for Romp n' Roll. They have been following our story and want to have us on the air.
Tomorrow should be a busy day at Children's Hospital and I have to stop by the DMV to get our new handy-dandy handicap sticker for the car.
Gotta go answer some emails...
Rachel
Feast or famine...I was just going to post this when Rachel posted hers. Sorry for any redundancy.
Had about as good a morning as we've had yet. Rachel had to get up with her early this time and is probably about to fall over.
Charlotte looked great this morning and has only needed a small amount of Tylenol the last couple of days.
We had a house full of people today including Uncle Kolbey who was officially watching her, and Holly Bingham and the "triplets" (not really triplets but might as well be!) who brought their amazing energy into CJ's space. Thanks a lot for visiting and sorry I had to abandon you.
Dad and Juanita Bonita are here and brought the case for the foamie hockey sticks! YAY!!!
I've been visiting other Caringbridge sights and I'm just amazed at the range and scope of situations. There are amazing stories of strength, courage, and recovery and those (mostly parents and spouses) who maintain the site in memorium long after the person has passed. And there are those of us in between just hanging in there.
I can hold my baby and let her fall asleep on my lap, like she did this morning, and for that I am so grateful. Others have not been as fortunate. Please keep the energy flowing.
Thanks,
Rog
Just a quick note to let folks know that you can go to the LINKS section of our Caring Bridge site for more information about how to get bracelets and how to access our Care Calendar. Since the grandparents are in town, we don't have a huge need for the Care Calendar right now, but we will try to let you know when needs have been posted.
I think we are "officially" out of bracelets although there are a few floating around at Romp n' Roll or at our house. More have been ordered and should be in soon. We have gone through 100 in about a week!
Must sign off for the evening as there is a big day ahead!
Rachel
Wednesday, February 11, 2009
Spinal tap
Working throught the new pain
Quick note before class.
CJ had a pretty good night. She woke up about 4:30 during a vitals check and I was forced to read Dora books to her for well over an hour which means I now have Dora Loves Boots virtually memorized from the multiple readings. She complained about head pain a few times and got some regular Tylenol (no codine) pretty early. No more after that. She fell back asleep at about 10am and slept until just before I left.
They were supposed to take her for an LP early as well which meant CJ couldn't eat. She was pretty hungry from the getgo this morning and I fended off more hunger complaints than headache ones. I asked when the tap was supposed to happen and the concensus was "hopefully early."
We all know what comes next. 7:00 came, no word. 8:00, same. 9:00, 10:00...Fortunately she fell asleep but once 1:00pm rolled around, I made it very clear to the staff that if she woke and asked for food, I was going to feed her and they could reschedule the LP for tomorrow. Our nurse, God love her, was being kept very busy by her other patients but found time on multiple to call and pester the various depts. involved and of course everyone told her to contact the other dept. Finally, they got the hint and just as she started waking up, we got word that it was on. They actually brought someone down from an adult floor to do the procedure and it was great because it was a doctor we already knew and wh loves Charlotte.
Now Rachel is back on for a couple nights and we have a DATE on Saturday thanks to Auntie 'Retta.
I'll let Rachel tell you about the Charlotte wrist bands...
Spinal Tap
The spinal tap is now finished and all went VERY well. They knock her out for this procedure so she went down fast and came back as if waking from a nap. Her pressure was actually 9 when they started (it was 8 when they finished the last tap) so that is very good news. It means that her ICP (Intercranial Pressure) is regulating fairly well.
Once she woke up, we had to wait a little while before feeding her but she is now chowing down on her "appetizers" while waiting for dinner: chocolate pudding, apple jacks, and choco-lax milk!
Had a wonderful visit with Dr. Dan (McCaffrey) and he made her smile and laugh quite a bit.
A few complaints about her head but not too bad.
OK, about the bracelets: Melissa Owens, my friend and colleague in the Virginia Music Therapy Association (and MT extraordinaire at MCV) has organized the purchase of these wonderful bracelets. They are similar to the Lance Armstrong "Live Strong" bracelets but they are hot pink (of course) and say Prayers for Charlotte on them. Anyway, VMTA is going to use them as a fundraiser for Miss Charlotte. We will be taking a few and Melissa will be taking the rest. Let us know if you want one. (operators are standing by...) :-) I think we will probably take some to the store as that will probably be an easy central distribution point.
Not much news to report other than that. Getting ready to meet with one of the docs about some digestive ideas. Will report more when I can...
Rachel
Maybe going home?
A very brief but positive update:
Dr. Tye was in to see her and as her ICP is at a great level, her white count is back to normal, and they have not been able to find anything in her cultures, he is doing all that he can to get us out of the hospital ASAP.
We basically need the OK from Shaaron (PT) to do outpatient vs. inpatient and I am sure a few other things will need to fall in line, but we are cautiously optimistic about the end of the week. In fact, rumor has it Dr. Tye has promised pizza to the staff if they can get us out of here by Friday. I offered to chip in!
Charlotte has just called for me to come sit with her so I must sign off...
Yay! Good news!
Some smiles
30,000+ hits. Ain't dat su'm? I've seen some with 25k and 18k but not 30. My mind keeps being blown. And now the braceletes? Nuts, man!
Did I mention that I taught Charlotte the name of her middle finger is the "Business Finger?" Not that we have been actively encouraging her to use it in any impolite manner but she'll figure it out soon enough and I think any scolding from me will be something like, "No lima beans for a month, young lady!"
Rachel
Learning the ups and downs of this
Cue the music...
"What a difference a day makes...24 little hours"
I guess that quote can go either way but at least in this case it's from bad to good. Or so it seems. She had a good evening although she was most insistent on watching LOTS of Dora. We did compromise and she watched Madagascar 2 (thanks Ms. 'Nette) for a change. Daddy also brought in the portable DVD player since the one in our room has no remote. Your only choices are play and stop wich means when there are multiple options on a DVD, you really don't have ANY. This was handy for many reasons, not the least of which was that Charlotte got to watch Dora on the portable DVD player while mommy watched LOST (with mute on and captions running) on the TV. I probably missed a few things but that's what my podcast and a re-watch on abc.com is for! At least I got to see it!
She is still complaining a little bit about the head pain but it's not too bad.
Ok, I spoke to soon...now she's really complaining but I think she is just trying to settle down to sleep. Just got the pain meds and they haven't kicked in yet.
More about the bracelets: we have requests coming in from far and wide. I am going to coordinate with Melissa soon and figure out A) the easiest/best way to distribute the ones we have and B) if we need to order more. Check here and/or on the Facebook site for updates o that.
I am signing off as I am tired...Here's hoping tomorrow is another day filled with good news and tonight is filled with (some) sleep.
Rachel
Bracelets
Updated and CHANGED---Important-PLEASE READ
After my last post, I got an email from Melissa and here is what I think we will do:
If you would like a HOT PINK Prayers for Charlotte bracelet, please email Melissa directly at cjbracelets@comcast.net Please put the word "bracelet" in the subject line of the email. In your email, please let her know:
Name, mailing address, phone #
# of bracelets wanted
dollar amount of payment/donation
If local, please indicate whether or not bracelet will be picked up at RnR.
Melissa will coordinate with you on addresses for mailing. We are asking for a minimum $3 donation per bracelet. Any bracelets picked up or delivered in the local Richmond area, 100% of the proceeds will be deposited into Charlotte's account and used for her health care expenses. Romp n' Roll-Virginia Center will be a central "bracelet spot". We will probably have some at our home (if you stop by for a visit) and Melissa can also help coordinate bracelet delivery as well.
For bracelets that will be mailed out of town, we will receive the net proceeds after mailing expenses. If you live in a geographic area close to others who may want bracelets (yes, I'm talking to you folks in CO, NM, and FL), please try to combine orders if possible to save on cost.
The initial order was 100 bracelets. I am thinking just based on the email and caring bridge requests we have already received, we will be placing another order soon. The more we order, the less expensive the production cost so please email Melissa as soon as possible to put in your request. We can always do a third (or fourth) order as well...
This is so exciting! I know folks have wanted to find a way to contribute and what a great tangible reminder of our dear, sweet, princess.
Checks can be made out to Charlotte as all monies will be deposited directly into her account.
By the way, if you have already donated so generously to our cause (and many of you have), please let Melissa know that you would like a bracelet (or two) and we will be happy to send you one or figure out a way to get one to you.
HUGS to all,
Rachel
Quick note before class.
CJ had a pretty good night. She woke up about 4:30 during a vitals check and I was forced to read Dora books to her for well over an hour which means I now have Dora Loves Boots virtually memorized from the multiple readings. She complained about head pain a few times and got some regular Tylenol (no codine) pretty early. No more after that. She fell back asleep at about 10am and slept until just before I left.
They were supposed to take her for an LP early as well which meant CJ couldn't eat. She was pretty hungry from the getgo this morning and I fended off more hunger complaints than headache ones. I asked when the tap was supposed to happen and the concensus was "hopefully early."
We all know what comes next. 7:00 came, no word. 8:00, same. 9:00, 10:00...Fortunately she fell asleep but once 1:00pm rolled around, I made it very clear to the staff that if she woke and asked for food, I was going to feed her and they could reschedule the LP for tomorrow. Our nurse, God love her, was being kept very busy by her other patients but found time on multiple to call and pester the various depts. involved and of course everyone told her to contact the other dept. Finally, they got the hint and just as she started waking up, we got word that it was on. They actually brought someone down from an adult floor to do the procedure and it was great because it was a doctor we already knew and wh loves Charlotte.
Now Rachel is back on for a couple nights and we have a DATE on Saturday thanks to Auntie 'Retta.
I'll let Rachel tell you about the Charlotte wrist bands...
Spinal Tap
The spinal tap is now finished and all went VERY well. They knock her out for this procedure so she went down fast and came back as if waking from a nap. Her pressure was actually 9 when they started (it was 8 when they finished the last tap) so that is very good news. It means that her ICP (Intercranial Pressure) is regulating fairly well.
Once she woke up, we had to wait a little while before feeding her but she is now chowing down on her "appetizers" while waiting for dinner: chocolate pudding, apple jacks, and choco-lax milk!
Had a wonderful visit with Dr. Dan (McCaffrey) and he made her smile and laugh quite a bit.
A few complaints about her head but not too bad.
OK, about the bracelets: Melissa Owens, my friend and colleague in the Virginia Music Therapy Association (and MT extraordinaire at MCV) has organized the purchase of these wonderful bracelets. They are similar to the Lance Armstrong "Live Strong" bracelets but they are hot pink (of course) and say Prayers for Charlotte on them. Anyway, VMTA is going to use them as a fundraiser for Miss Charlotte. We will be taking a few and Melissa will be taking the rest. Let us know if you want one. (operators are standing by...) :-) I think we will probably take some to the store as that will probably be an easy central distribution point.
Not much news to report other than that. Getting ready to meet with one of the docs about some digestive ideas. Will report more when I can...
Rachel
Maybe going home?
A very brief but positive update:
Dr. Tye was in to see her and as her ICP is at a great level, her white count is back to normal, and they have not been able to find anything in her cultures, he is doing all that he can to get us out of the hospital ASAP.
We basically need the OK from Shaaron (PT) to do outpatient vs. inpatient and I am sure a few other things will need to fall in line, but we are cautiously optimistic about the end of the week. In fact, rumor has it Dr. Tye has promised pizza to the staff if they can get us out of here by Friday. I offered to chip in!
Charlotte has just called for me to come sit with her so I must sign off...
Yay! Good news!
Some smiles
30,000+ hits. Ain't dat su'm? I've seen some with 25k and 18k but not 30. My mind keeps being blown. And now the braceletes? Nuts, man!
Did I mention that I taught Charlotte the name of her middle finger is the "Business Finger?" Not that we have been actively encouraging her to use it in any impolite manner but she'll figure it out soon enough and I think any scolding from me will be something like, "No lima beans for a month, young lady!"
Rachel
Learning the ups and downs of this
Cue the music...
"What a difference a day makes...24 little hours"
I guess that quote can go either way but at least in this case it's from bad to good. Or so it seems. She had a good evening although she was most insistent on watching LOTS of Dora. We did compromise and she watched Madagascar 2 (thanks Ms. 'Nette) for a change. Daddy also brought in the portable DVD player since the one in our room has no remote. Your only choices are play and stop wich means when there are multiple options on a DVD, you really don't have ANY. This was handy for many reasons, not the least of which was that Charlotte got to watch Dora on the portable DVD player while mommy watched LOST (with mute on and captions running) on the TV. I probably missed a few things but that's what my podcast and a re-watch on abc.com is for! At least I got to see it!
She is still complaining a little bit about the head pain but it's not too bad.
Ok, I spoke to soon...now she's really complaining but I think she is just trying to settle down to sleep. Just got the pain meds and they haven't kicked in yet.
More about the bracelets: we have requests coming in from far and wide. I am going to coordinate with Melissa soon and figure out A) the easiest/best way to distribute the ones we have and B) if we need to order more. Check here and/or on the Facebook site for updates o that.
I am signing off as I am tired...Here's hoping tomorrow is another day filled with good news and tonight is filled with (some) sleep.
Rachel
Bracelets
Updated and CHANGED---Important-PLEASE READ
After my last post, I got an email from Melissa and here is what I think we will do:
If you would like a HOT PINK Prayers for Charlotte bracelet, please email Melissa directly at cjbracelets@comcast.net Please put the word "bracelet" in the subject line of the email. In your email, please let her know:
Name, mailing address, phone #
# of bracelets wanted
dollar amount of payment/donation
If local, please indicate whether or not bracelet will be picked up at RnR.
Melissa will coordinate with you on addresses for mailing. We are asking for a minimum $3 donation per bracelet. Any bracelets picked up or delivered in the local Richmond area, 100% of the proceeds will be deposited into Charlotte's account and used for her health care expenses. Romp n' Roll-Virginia Center will be a central "bracelet spot". We will probably have some at our home (if you stop by for a visit) and Melissa can also help coordinate bracelet delivery as well.
For bracelets that will be mailed out of town, we will receive the net proceeds after mailing expenses. If you live in a geographic area close to others who may want bracelets (yes, I'm talking to you folks in CO, NM, and FL), please try to combine orders if possible to save on cost.
The initial order was 100 bracelets. I am thinking just based on the email and caring bridge requests we have already received, we will be placing another order soon. The more we order, the less expensive the production cost so please email Melissa as soon as possible to put in your request. We can always do a third (or fourth) order as well...
This is so exciting! I know folks have wanted to find a way to contribute and what a great tangible reminder of our dear, sweet, princess.
Checks can be made out to Charlotte as all monies will be deposited directly into her account.
By the way, if you have already donated so generously to our cause (and many of you have), please let Melissa know that you would like a bracelet (or two) and we will be happy to send you one or figure out a way to get one to you.
HUGS to all,
Rachel
Subscribe to:
Posts (Atom)