Saturday, February 28, 2009
AMEN, George! If I get up the energy and this continues to enrage me as it does, I can guarantee that I will be contacting my legislators to tell my story.
As I left for work this morning, Charlotte was all about Daddy! She woke up with a poopie diaper and only daddy could fix it (I was really sad about that, let me tell you). She is hopefully going to stop by a Romp n' Roll birthday party this afternoon for one of her friends and one of our best customers! It will be her first experience in a "structured" time at RnR. We'll see how it goes.
Roger was an exceptional parent last night. She has decided that she doesn't like the taste of her antibiotic. They tried to flavor it but this is one of those where the flavoring doesn't really work. She has been fighting taking it for the last few days. Anyway, Daddy's great idea last night was to fill another syringe with milk (the medicine is thick and white) and he took the "medicine" right alongside Charlotte. Genius! He also stayed up with her (she had a long early evening nap so she was up late) so I could get some sleep so THANKS, Rog!
Thanks for all the ideas about what to do regarding Charlotte's hair loss. We have been thinking about a few ideas. Definitely going to try to do something with the head shaving idea but no concrete plans yet. Also, someone came up with what I think is a GREAT idea for Charlotte once she starts to lose her hair. We are going to plan a hat/scarf shower for her, possibly after this first round of chemotherapy. I think it will be a fun dress up tea party for some of her friends and we'll probably have it at Romp n' Roll. Of course, adults will be welcome but I think this might be a fun way to get some of the kids involved as well. The purpose will be to "shower" her with fun and creative hats, scarves, and other headwear that she can use once she loses those curly locks. We'll see how that goes since she's never really been a "hat" kid. That may change once she doesn't have any hair to keep her head warm! We'll let you know when we set a date.
I'm off to teach classes and run some birthday parties. Don't forget that Spring session starts March 9th at Romp n' Roll! (That was my shameless commercial plug) Enjoy the weekend.
Friday, February 27, 2009
As it turns out, while MCV is considered an in-network provider for all of Charlotte's other medical needs, it is not considered an in-network provider for her transplant services. That includes both the collection of her stem cells as well as the stem cell transplants. The closest in-network provider is DUKE.
What this means now is that Dr. Khan will have to write a referral to Duke for the stem cell "stuff" and we will probably have to go to Duke for anything related to the stem cells. As far as we can tell, all of her chemo,etc. will still be handled at MCV. Don't know how this might change the timeline of things, though.
I have nothing against Duke as I know they have a wonderful reputation and I know we will be well-cared for when we go there for that part of the process, but uprooting us from our home to go for a treatment that can very easily be provided in our hometown by QUALITY professionals simply because the insurance company deems it so seems a little RIDICULOUS.
I will now take this moment to rail on the insurance companies:
1. Why would MCV NOT be considered an in-network hospital for her transplant services? One of the leading hospitals in the country AND Richmond is home to UNOS...one of the leaders in coordinating transplants. That's just craziness. Johns Hopkins wasn't on the list as well...wonder what it takes to get on the "list"
2. Why should it matter to an insurance company whether they have "in-network" or "out of network" providers? It seems like they only care about getting paid anyway. I would think MCV would pay them just as easily as Duke.
3. Why should any of this even matter? My kid has cancer and she needs treatment. I paid for insurance that would provide her with a) wellness care to keep her healthy and b) a level of care that will provide for her if (God forbid) she is ever extremely sick. Which she IS. I thought that was what insurance was for.
It drives me crazy that health care is considered a privilege and not a right in our society. Say what you will about health care policies in other countries, health care costs in general, etc. but NOBODY should be denied quality health care because they don't have a good job, the right kind of insurance, or "pre-existing" health issues. We would all probably be a healthier society in general if we didn't have to make choices between health care (whether it's paying for insurance or out-of-pocket expenses for care) and paying our electricity, mortgage, food, etc. I feel relatively blessed in this whole process that this is the first snag that we've come upon. What happens to those folks with NO insurance? Or lame insurance that only pays for certain things but not for others?
The thing is, there shouldn't be "good" insurance or "not-as-good" insurance and you shouldn't have to make choices about the quality or location of your care because of what an insurance company says they will or won't provide. I understand that insurance rates are based on risk and health history and (blah blah blah) but in the grand scheme of things, we should all have the right to affordable, quality care.
It kinda reminds me of the tax system. If you have enough money and can hire the right people, you can wade through all the loopholes and figure out how to minimize your tax liability. If you don't, then you just file your basic return, pay your basic taxes, and in the end you pay more of your share than someone with a higher income (because you don't know how to navigate the loopholes, deductions, credits, etc.). The insurance system is similar. If you have a great job that provides you with "better" insurance or if you have someone there to fight the insurance companies on every single denial they put forward, then you usually win and get what you want. But that takes time, energy, and $$. And many of us don't have that.
I'm sure many of you would argue my points but I guarantee I haven't the energy....all I have to say is that if you are opposed to changes in our health care and insurance system as it stands, may you never be in our shoes. Or the shoes of many of the families whom we've met over the last few weeks. It certainly can change your perspective.
-Roger here adding something totally unrelated to the insurance tangle-
If you are in the Hanover County area of Virginia, please buy a copy of the Hanover Herald-Progress for this week and then again next week. This week has an ad for the store and next week has an interview we did with Greg Glassner about Charlotte.
Thursday, February 26, 2009
We're off to see Dr. Khan this afternoon and will hopefully have more news about chemo timeline later today.
We said goodbye to Grandpa and Grandma Bonita this morning. They're headed to Florida (so jealous...even with the slightly warmer weather, I'm sick of winter).
So, anybody else see LOST last night? Dude! What an awesome show! It is definitely the only show I keep up with anymore on a regular basis and they only one that I HAVE to see "live" each week. I'm totally amazed by the acting and the amazing storytelling. True genius.
Gotta go love my daughter.
Our visit with Dr. Khan is finished. Lots of news...
First of all, the parking gods were with us today because finding a spot in the garage was totally hassle free. I think Roger is my good luck parking guru. He has the best karma for stuff like that.
Of course, getting in to see the doctor was not nearly as lucky. It wasn't horrible, but we were definitely on "hospital time". Charlotte was sufficiently entertained by volunteers and the wonderful music therapist at MCV (who could that be? Thanks, Melissa!).
The Hem/Onc clinic is like a super-charged doctor's office. We loved the animal-themed rooms (especially for a kid like Charlotte who loves wildlife) and the in-room entertainment is super deluxe (DVD players and VCRs in every room). So even though we had to wait, we had a lot to entertain us.
Dr. Khan took some history and got an update. Our current plan is to begin chemotherapy a week from today (why does everything seem to happen on Thursdays for us?).
Some not so good news is that because she's not back to being "potty trained", they will need to put in a catheter on Wednesday to collect an accurate urine sample for about 24 hours. She will also get a hearing test to get a baseline as some of the chemo drugs can cause temporary and/or permanent hearing loss in kids.
Thursday will start at about 9 AM in the clinic with IV fluids and getting everything "ready". Then we will be admitted into the hospital until probably Monday. She will have a course of 4 different chemotherapy drugs as well as other medications that combat some of the effects of the chemo. everything will be administered via IV. We will be back on the 7th floor of the main hospital but do not need to be in the PICU or the Intermediate Unit.
Roger and I are currently figuring out our schedule for the weekend and we will let you know if we need any assistance. The good news is that Aunt B will arrive on Friday so that will help a lot!
She will have PT/OT at Children's until this starts and may even be able to continue therapy at the hospital as long as her energy level stays up.
For those wondering, visitors will be welcome as long as the "normal" precautions are observed. Please don't visit if you are fighting a cold or recently got over being sick. We don't know at first how she will react to all of the medications so don't be surprised if you do choose to visit and she is not up for "social" time.
I guess that's all for now. I'm sure Roger will add his two-cents this evening.
Wednesday, February 25, 2009
So now I’m typing this in Word and I’ll try to continue to do it this way from here on out.
So let’s try this again…
Charlotte has been doing just awesome lately. I was standing in the kitchen yesterday, minding my own business when I felt something bump into my butt. I was going to scold Juanita for getting fresh with me but then found out it was CJ, come all the way over from the couch on her own to scare me!
She was quite the love bug yesterday. I wish I could have been there more to hang out with her but duty called as it does today. She’s becoming a little uncomfortably (at least for Dad) fond of boys! It’s not supposed to happen this early, is it? The shotgun thing doesn’t work so well when it’s her chasing them! Oh well. Guess I need to distract myself with work.
I’m finishing up details for one of the new classes and I am putting out a:
Call For Recycled Stuff!
We are gearing up for an exciting spring session at Romp n’ Roll-Virginia Center and Rompy loves to recycle (well, actually, he just likes to chew on things but…). Here’s a list of things we will need for our new class, “Rompy’s Band.” If you have some of this stuff just laying around, we’d love to put it to good use.
Oatmeal/coffee cans. Clean and dry with lids. Might have enough but can always use more.Shoe boxes with no “silly”cone packets¾ inch and 1 inch PVC pipe scraps. As short as 3 inches or as long as you have.Long cardboard tubes. Wrapping paper tubes, packing tubes, tubes that climb on rocks…no…wait…I’m channeling old commercial jingles.Foam rubber. Anything at all from packing materials to old shirt shoulder pads, a sheet of that stuff that goes on the walls of recording studios. Even the webbing that goes around fruit sometimes.Wine glasses. For the old “finger-‘round-the-rim-make-it-ring” trick so they need to be glass. You won’t get these back so make sure they’re old, unwanted, but still ring! JOld, defunct keys. Any old keys that are doing nothing but gathering dust in your drawers…uh…never mind. Just make sure they don’t go to anything important. Then again, if you just happen to include the key to your Ferrari…(there’s another song in there somewhere.)Old but functional musical instruments. Trombone, trumpet, fiddle, shawm (bonus points if anyone actually knows what that is. Super duper extra bonus points if you actually HAVE one), saxophone, etc... These you can have back eventually if you want them. No recorders! PLEASE NO MORE RECORDERS!!! I actually have about 150 recorders (ok maybe not that many but they seem to reproduce when I’m not looking. Then again, if someone had a bunch of new recorders for which they can’t find a use, they would make great little parental torture devices…I mean musical gifts for the members of the class).Megaphones. The little plastic ones you get at races would work great but if anyone has an big one from way back, it might be cool.Quilting hoops.New, clean combs. The classic, guy’s back pocket, little black comb.
Might need more stuff later but I think this is a long enough list already.
Thanks again to everybody!
p.s. We just got the first “bill” from the hospital. We just about fell over until we realized that there was a big “0.00” in the “amount due” box. Now we get to see just how good our insurance is. We have Humana in case anyone is curious and so far, it seems to be pretty awesome. We’ll keep you updated on that as well.
p.p.s. Charlotte is at the therapists office as we speak and Rachel just sent some pics via her phone camera. CJ’s doing a great job with that left hand! I’ll see what I can do about getting the new pics up.
Tuesday, February 24, 2009
Monday, February 23, 2009
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...
Sunday, February 22, 2009
Also, Uptown Vocal Jazz Quartet performed at Radio From Downtown last night and it was by far our best overall gig as a group. One of the cool things is that Van Williamson, head honcho of the show, mentioned CJ at the end during the thank yous. I certainly didn't ask him to do it.
Running out of battery...
A not so lazy Sunday...Charlotte and I went to church this morning and we were greeted with such a welcoming committee! We went in just as Sunday School was ending and Charlotte got to see so many of her friends. Lots of smiles all around. She hung out in the nursery during the first part of service and did very well without Mom. Then she came up for communion and the whole church just beamed with smiles as they saw her. She was surrounded by well-wishers after the service and she greeted them with smiles in return. Thanks to our SJTL family for everything you have done for us! The pastor's sermon today was on "miracles all around us" and he actually stopped before the end of communion to comment on Charlotte's presence and what a testament it is to those Miraculous Moments in our lives. I couldn't agree more!We then had a wonderful lunch at Applebees (thanks Grandpa and Bonita) and then we were off to RnR to do some "work". Grandpa installed a new box to store the hockey equipment in the back. Charlotte did some art projects and explored the gym. She is really getting around independently! Then we returned home for a "break" of some TV but she also wanted to pull out her lap desk and make some pictures. She has been drawing and cutting paper all evening. Just as she was starting to get grumpy and uncomfortable, we were greeted with a very sweet surprise: The St. James the Less Middle School Youth Group stopped by and FILLED our kitchen with songs, laughter, and lots of Dora-themed and girl-themed goodies for Charlotte. Such blessings! She laughed and smiled and we enjoyed reading all the handmade cards afterward. Now Daddy is home (finally!) so I will sign off.
Saturday, February 21, 2009
Friday, February 20, 2009
Well after our wonderful breakfast this morning (mmm...Cracker Barrel! What a treat!) we kissed Daddy goodbye and headed to MCV for our meeting with Dr. Tye. Charlotte and I had a discussion about whether Dr. Tye would be wearing a tie (as he sometimes does) or scrubs (as he usually does). Her guess was scrubs. Mommy's guess was tie. Charlotte won!
Word to the wise: a handicapped tag is NO help at MCV. We actually had to go through the parking garage 2 times to find a space. Of course, I counted at least 6 "open" spaces but since they like to sandwich the spaces as close as humanly possible and many people like to "straddle the lines" (or worse, just take up two spaces entirely) we were out of many options. Finally found a spot between two HUGE SUVs on the 4th level and traipsed over to the ACC for our meeting with Dr. Tye and Joann. She looked great to them, got both of her sutures from her ventric line removed and were told they would meet up with us again once we started things with Dr. Khan.
Then we had a quick lunch at the hospital Chick-Fil-A (of course) and then hurried home to meet friends from Commonwealth Autism Service who stopped by to visit. I then left Charlotte with Grandpa and Grandma Bonita while I went to Romp n' Roll to work!
It is so great to hear everyone's comments about the journal and how they love to keep up with Charlotte's goings-on.
Open Gym almost done so I must start to clean up...gotta go home and put Abby Cadabby in her newly redone fish tank.
Thursday, February 19, 2009
We had an early morning, as Roger mentioned, but she didn't fight getting up too badly. Her therapy session went well and she worked HARD. They are having trouble scheduling our PT and OT together since they are trying to get us in as much as possible on very short notice, but her PT had a last minute cancellation at 8 AM this morning so the OT and PT co-treated! Gotta love the interdisciplinary model!
They had her working on her hands and knees on a puzzle (requires extra balance and strength), working over a bolster, standing and sitting on a platform swing, walking, and (of course..her favorite) riding that trike. She also worked on using that left hand. We had to seriously hold down the right but she did it with only a few tears and whines.
She had a somewhat relaxing morning after that with some movies but we got up and walked before and after lunch.
When Roger got home, we changed her dressing on her central line. She didn't like that much but a necessary evil, I guess. After that, I left them to their devices and scuttled off to work. (Shhh...don't tell my boss I'm writing this while on the clock!).
She has a speech eval this afternoon and then we go see Dr. Tye at MCV tomorrow for a follow up.
I love the "Easter Egg" idea someone proposed about shaving heads and losing hair. I'm still not sure if I'm up for that but I know we've already had a few people volunteer their scalps! I guess my child who never really liked having her hair combed let alone having it "styled" with barettes or bows will somehow get a reprieve from the hair routine...gonna miss those curly curls, though!
Gotta go get some work done. It's quiet in Open Gym right now but we're hoping our Parent's Seminar tonight at 5:30 will be busy (Kid's Health and Obesity...come on out!)
Wednesday, February 18, 2009
It's Bidnesstime...(silly TV reference that has nothing to do with anything other than it's Wednesday.)
Reason #42 Why I Love CiCi's Pizza in Hanover:
They are now participating in a Hanover County Schools program in which students with special needs come in with an assistant and are given "jobs" like bussing tables, greeting customers, etc... This gives them confidence, social interaction, and real job skills they can use in the future. Kudos to everyone involved with that.
Paired with our partnership with them at Romp n' Roll and the generosity they have shown to us during Charlotte's "tumor adventure," I'm convinced they need to have a lifetime membership of some kind cause I'd sign up in a heartbeat!
I need help (insert joke here). I was told by an RNR customer of a Caringbridge site for a guy named Jacob but I have since lost the paper I used to jot it down. The dad is now staying at home full time to take care of him. Anyone reading this have the slightest idea what I'm talking about? Please let me know if you do.
Gotta go work on Rompy's Band!
We went for PT and OT at the Children's Hosptial West End location. She did well working with Ms. Lauren and Ms. Aileen with very little whines or fussing. She is doing SO much better walking on her own. We are practicing standing on one foot, standing up and sitting down, and walking (including walking up and down stairs). Her shining star moment today was when Ms. Aileen brought out the pink princess tricycle for Charlotte to ride. Without ANY prompting, Charlotte stood up from her chair and walked about 3-5 feet just to get to that trike! Then she worked on riding the tricycle up and down the hall. Superstar! Grandpa and I were most impressed.
We capped off the morning with a visit to Costco for our famous traditional lunch of pizza and ice cream (frozen yogurt). She fell asleep on the way home.
Our therapy schedule is (mostly) set for the next two weeks. We are aiming for Monday and Thursday mornings which works very well with our RnR schedule. This should take us up till the time that chemo will start.
We do have a need for some child care help on the next 2 Tuesday mornings from about 8:30-12:30. Roger and I both need to work so we just need someone to come to the house and be with her. Other kids can come as long as they are healthy. We have posted this on the CareCalendar so if you can help, please go there and sign up. (First come, first serve) There is a link to the CareCalendar including login information on the LINKS page of our Caring Bridge site. We may post more information soon as we have needs...
I must sign off and try to be productive...
Overheard at dinner:
"Mommy, when I grow up I want to be a mommy just like you."
Sniff sniff! She's a doll.
Tuesday, February 17, 2009
A quick addendum to the evening:
Charlotte was rather grumpy for a while (channeling her mom's energy???) but looking at recent get-well card arrivals and reading for a while really made her day. Her eyes completely lit up when she saw the homemade pictures from Kyle and Katie (Thanks!) and the homemade painted heart from Ketty's friend from church. Thanks, All! Then we read her High Five magazine (I think each story 3 times!). When she ran out of options, she said, "I want to pick some new books myself". I got her off the couch and she walked with me barely holding her hands over to her bookcase. She carefully picked out two selections and returned to the couch. We did this TWICE and each time her walking was more and more independent. By the end, she was walking with very little support and doing a GREAT job holding her hands out to grab a chair or the edge of the couch if needed. Yay!
BTW, forgot to mention in a previous post that the doctor has told us that we don't need the wheelchair. We can get by with our jogging stroller (and it will probably actually be more supportive). Because of this, I don't think we will need the wheelchair ramp after all (thanks to those who had offered).
Must rest and enjoy some time with my hubby...once CJ finally falls asleep!!
Monday, February 16, 2009
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...
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.
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!
Sunday, February 15, 2009
My Turn...I just want to add my 2-cents and wax a little poetic about my family.We did have a lovely evening last night. It was so good to just talk with Roger about all the different feelings that keep "popping" up as we think about what has happened and what will/might happen in the journey ahead. Through all of this I continue to feel incredibly blessed. I know that may sound strange and ironic to some given what we have been through, but I'm just not programmed to think any differently. When Roger says "we" were up with Charlotte last night, it really was just him. I was falling asleep at her bedside (which actually amused her to no end when I bonked my chin on the bedrail) and Roger gave me the a-ok to hightail it to sleep. Then he was up-and-at-'em and out the door by 7:15. You know, he may not be perfect and I have sometimes complained about his faults (I mean, really, it's GOT to be better to do things MY way...) but I really couldn't ask for a better husband! He's a keeper.An update on the bracelets: I think based on "pre-orders", we are already sold out of the first batch. Melissa will be sending some out soon. Annette is creating a web-page link so we can do online orders through paypal as well (if anyone wants to use that option). This is all "coming soon" and we will send out an update when it is official. We will be putting in a new order for bracelets soon so if you haven't received yours yet, you will in due time. If I haven't mentioned it yet, special thanks to the Virginia Music Therapy Association and the Harmony Fund for the "seed money" for the bracelets. I will sign off as the lil' princess will probably be awake soon.Rachel
Pancakes for Charlotte
Another busy day! She slept in until after 10! Then she wanted pancakes for breakfast and, of course, mama didn't have any instant pancakes in the freezer. And waffles just wouldn't do. SOOOOO, I made homemade pancakes for Charlotte (the things I do these days...). Of course, I laced them with flax meal while she ate her applesauce laced with flax oil. I finally gave her a shower today. She screamed the whole time but I think she did feel better afterward and her hair looks much better.Around 1 PM, Anja and her mom Meredith came by. They are friends from Charlotte's Preschool (Hanover Montessori). Charlotte and Anja had a wonderful playdate while Meredith organized the pantry and helped hang lots of Charlotte's get well cards in the dining room (did I mention she's a designer??). Charlotte and Anja played dress-up, read stories, colored, watched Dora and laughed, laughed, laughed. It was wonderful. During the course of the day, we have also had two more "unassisted" poops. Praise be FLAX!Now dinner is cooking (thanks Hansen family) and we are settling in for a quiet evening. Roger has been working all day at RNR and a rehearsal in Northern VA. Busy guy!Gotta go check on my cookie monster...(she keeps asking for more of those great Plank Family cookies and gosh darn it, I keep giving them to her. So much for not spoiling her appetite for a healthy dinner!)Rachel
Saturday, February 14, 2009
Friday, February 13, 2009
It was so good (in so many ways) to be home last night. We got settled fairly easily, thanks in part to Auntie Retta delivering the bedrail and unloading the car. She had a small dinner (after she had already eaten at the hospital) and then watched some TV in the comfort of her own couch. There were lots of laughs and giggles all around.
She fell asleep around 8:30 PM and slept till around 4 AM. Woke up asking for some pain medicine and was then up for a little while (Thanks, Rog!). Still sleeping at 8:30. Hooray for no "beeps" or early morning docs in our rooms!
We are looking forward to a day of some rest, some walking/hand movement practice, and maybe some visits.
Thanks to everyone who has showed interest in the bracelets. I think you are keeping Melissa busy! We will be looking into a PayPal option as well that would go directly into Charlotte's account. Stay tuned!
No updates on the Care Calendar yet but I need to look at the upcoming week's schedule and see what our needs will be. Grandpa and Juanita Bonita will be here Monday so that will help a bunch.
We are happy to receive visitors (especially kids!) as long as we are home. You can call to check before you come (just to make sure we didn't decide to run out somewhere). Roger is working most of today, I'm working most of tomorrow, but CJ is HERE!
See y'all soon,
Very quick note between classes.
I'm typing this on my very cool super duper schmooper new laptop given to us by Aunt Jamie Jamie Tamm Tamm the name so good good you gotta say it twice twice and her coworkers down in Daytona Beach! Thanks guys! The Eee PC will go to the Child Life dept. at MCV for use by another family. Thanks Murphys!
The big wad of bracekets I brought to the store this morning are almost gone already! Thank you all for your enthusiasm. Melissa has no idea the monster she has unleashed! We'll take it.
Time for Rhythm n' Roll! Wish me luck! :-)
Adjusting to homelife again
A busy but still relatively quiet day.
She slept in until after 9 AM (woo hoo!), had some breakfast, and then we watched the first Madagascar movie. She had never seen it before (just the sequel) and she laughed a LOT. Great to see her so happy. We did try to walk two times and she was not too happy with that. Did it very begrudgingly. She also sat at her new lapdesk (thanks Farmer family!) and did some drawing with markers and decorated a princess paper doll with stickers. Busy Day!
Then we had lunch...a wonderful meal from our freezer from the Quinley family. After that it was definitely time for a nap and she has been resting peacefully.
I have spent the morning "settling in" and unpacking some of her stuff. The wheelchair has been delivered although it is not the one that we will be using on a more permanent basis. They didn't have the right one for her in stock so brought us this one temporarily. Her home health supplies also arrived today. We are not sure right now whether we will need a ramp. We are in the process of completing the paperwork for the county right now (we need a permit) and have offers from two people for ramps so we will try to get back to you soon. Fortunately, she is still small and relatively light so if we need to carry her in from the car, it's not such a big deal.
Other good news: her need for pain medication has definitely lessened. I have been trying to forestall the pain medication whenever possible and distractions and other entertainment do seem to help. She has just had a dose of regular tylenol about every 8 hours. Yay!
Time Magazine came today and what was on the cover? How Faith Can Heal...how interesting and timely. Can't wait to read it.
More updates to come. I think Charlotte is waking up.
Thursday, February 12, 2009
Today will be a little crazy so I apologize in advance if we don't get to speak with any of you personally, but we have been given the CLEAR to go home today. We will be getting things together, meeting with nurses to go over care of her port, and getting a wheelchair and brace for her leg. Outpatient rehab will start on Tuesday at Children's Hospital of Richmond.
YAY! We are so excited!
More updates to come...
Wednesday, February 11, 2009
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...
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...
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!
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!"
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.
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 firstname.lastname@example.org 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,
Tuesday, February 10, 2009
First post of the day
NOT having a good night (again). WARNING: DO NOT READ BEFORE OR IMMEDIATELY AFTER BREAKFAST...
She went to sleep around 10:30/11 after eating a LOT of food. By special request, she had chick-fil-a french fries, chocolate ice cream, and some apple juice. She had a nice bath and settled down for some movies, including Monsters, Inc. and Lion King 1 1/2.
Around midnight, I was up and she was complaining that her tummy hurt. I asked her if she needed to throw up but she said no. Her belly felt warm. Otherwise she was ok and fell back to sleep.
The fun began about 3:30 AM. I heard some coughing and thought maybe she needed some water. I woke up to find her covered in vomit, most of the food pretty undigested from earlier. All the nurses came in and we got her cleaned up. Then she vomited some more. Got her back in bed with an order for zofran and they were going to monitor her. Less than 15 minutes later, she vomited again. Her belly is VERY warm and we are thinking (hoping) this is mostly GI and a result of not pooping everything out. There might be some kind of blockage keeping everything from going in the right direction. They are probably going to order an x-ray as well as another enema to flush everything out (if they can).
Sigh...no sleep for mama again...
I hate to see her like this. Will update more in a bit.
The interns were kept at bay for a little while. She awoke at about 6 am and felt really warm so I called the nurse in to take her temp. Fever of 101. She said that she was holding the interns back. It cracks me up. The intern said she needed to "see her patient and check her breathing". I wonder if she missed the lesson on how patients are hooked up to telemetry so you can monitor their breathing, heart rate, and pulse. She's sleeping and her mom is in the room monitoring her progress. Give me a break! How many medical students does it take to check a patient's vitals in a 2 hour period? (Apparently more than I ever imagined).
I understand it is a teaching hospital and I love the fact that it is. I hope these students are learning a lot from Charlotte's condition and situation. I just don't understand the lack of efficiency in all of it. Do they think they are "cheating" if they all come in together to do their checks rather than coming separately and all finding the same information? I also understand that we can say "no" to the med students. At this point, I either have not had much energy to pursue that or I fear I will just be really rude and B*$%chy (sorry for the slur) and I'm trying not to go down that road...
After Nurse Princess left, the doctors saw their "in" and descended in due order around 7:30/8. She has been sleepy all morning and I have done my best to minimize any intrusion on her rest. The overall concern now is infection. Her left side also seems much weaker which could be a combination of the infection or other factors. Dr. Tye wants to do another CT scan and figure out if she may need a shunt after all. They may do another lumbar puncture under general anasthesia too. It also looks like her central line may now be infected as the area around her line is getting red.
Did I mention that it has not been a good day so far?
She did try to get up and eat. Ate a cup of applesauce and two bites of pancake and then wanted to go back to sleep.
I am WAY over staying at Hotel MCV. Today marks three weeks that we have been on this journey. The way things are going, I anticipate that we might actually be here a whole month before all is said and done. And this is really just our first "tour of duty". I totally understand why they need to keep her here and appreciate this situation more than going home and then having to come back, but it still sucks. No other way to put it.
I'm off to seek out coffee...
More news of fever
And now your moment of Zen...
A moment of peace in what has been a blustery day. The day really did zoom by and I can't believe it's already 4:30 PM. As bad as it's been, I guess it's good it went by fast.
Charlotte's preschool teacher here at the hospital (Ms. Rasberry) and the art therapist stopped by earlier in the day to check in on her. As she was "out of it" with the fever, they offered to take care of mom and brought me a yummy coffee. So sweet! (and so needed!)
Charlotte's fever spiked at about 102 degrees sometime before noon. They told us early on that they are trying to determine the source and specific type of infection. She is now on a stronger antibiotic until they can determine the specific cause. Blood and urine samples have been collected and cultures are being done as we speak. She went down for the head CT and no official news but they did let her eat again until midnight so I guess that means that if they are going to have to do any kind of surgery, it will be tomorrow.
She slept for most of the morning and then once the fever broke, she was alert and talking. She worked very hard in PT today and Shaaron continues to be impressed with her performance and progress (through the tears!).
We got our application for our handicapped parking permit. Yay! Who wants to ride with us to Disney World? The outlet malls? Sports Arenas? We get dibs on the good parking spots!
Thanks to everyone for the moral support during this "setback". Yes, it feels like a step backwards and I sometimes feel my mental health fading but we are (in general) standing strong on the shoulders of EVERYONE's prayers, words of comfort, and help.
More news as we know it.
A very long day
What a lovely end to a crappy day. She slept and slept and slept. I tried to rouse her around 6 PM to eat something and she just kept slipping back to sleep. What's that rule about sleeping babies??Anyway, around 7 PM I figured I needed to get her up for 2 reasons: if she was going to be NPO after midnight, I needed to get some food in her tummy AND I didn't want Roger to be up all night with a well-rested child. (You're welcome, honey!). I finally got her up and while her appetite was not as RAVING as it has once been, she did eat some peaches, a little spaghetti and broccoli, and some chocolate pudding (yum). One of the neuro docs came in to check on her while we watched Jeopardy and he even evoked a laugh in her. You can tell he has young kids at home himself. THEN Auntie Retta arrived and as usual, there was the godmother/goddaughter exchange of the "knowing looks", thoughtful smiles, and a few giggles. They have such a sweet and special bond and I am so happy for that! THEN, just as we were getting miss princess back into bed, Daddy arrived. Then the real fun began. We started talking, sharing stories, experimenting with play-doh, and singing funny songs and the antics between mom, dad, and auntie Retta had miss Charlotte in fits of giggles. It was so great! Our current "monkey trick" is that we are trying to teach Charlotte to say a certain phrase in response to any doctor's questions: "Look it up in my chart!". Our other new mantra is: "I expect to be home by Sunday!" I also think it would be great for Charlotte to learn how to execute the "pull my finger" trick for every time the docs ask her to squeeze their fingers (part of their neuro checks). Hey, if we're going to be stuck in the hospital, we might as well work on her show business act and comedic timing. My current hypothesis is that much of her pain in the past week has been GI-related. Now that she has emptied herself and had a full day of rest, I think she is well on the mend. She had NO pain medication from 8 AM this morning until after I left and very little complaint of head pain. While there may be some kind of infection lurking in her, I am hoping that she will prove to be the quick healer that she normally is from infectious type things and fight, fight, fight. Hopefully her port will be able to come "clean" as well. Let's all focus our positive thoughts in a weekend release (or sooner???) and mom and dad will be MOST happy.On another note, I am continually touched by the kindness, thoughtfulness and poignancy of Charlotte's peers. Children are so spiritually minded...I think it is just a natural state of being for them. And I'm not even talking about religion, per se, but a heightened sense of that greater Spirit that envelops us, guides us, and protects us. It hearkens to mind the Biblical allusions where we are called to come to God "like a child". Perhaps if we all looked at our life situations through the eyes of children we would find greater strength, peace, and understanding. Children trust inherently that their caretakers will provide for their every need. They trust in the wisdom of their parents as omniscient beings (at least until they become tweenagers) and they instinctively know that their parents will protect them in times of danger. I think as grown-ups, it is so much easier to let the cynicism and hard realities of life create negative energy. We forget to trust God, especially when it matters most. Most children, on the other hand, are just naturally positive. Maybe that's what keeps me going these days. I certainly feed off that energy when I'm at Romp n' Roll or get to see Charlotte's other friends.Ok, I have waxed poetic quite enough for one day. I will close and run off to bed...Rachel
Dad on the nightwatch, here. Charlotte did complain a little about her head hurting but it was pretty minor and she was so tired, I just distracted her with stuffed animals, the nurses gave her a bath, and now she's out. After the difficulties I know Rachel went though, I feel I'm getting off pretty light. It was so nice to see and hear CJ laugh tonight. We filmed a little of it. I'll download sometime this century.
Need to take advantage of the princess snoring.
Monday, February 9, 2009
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.
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.
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!
Sunday, February 8, 2009
CT in the ER
Last night was not bad. Charlotte still had head pain but we got her out of bed and she scarffed her dinner while we watched "Enchanted" (very cute movie, by the way). We both went to sleep around 9:30 and I didn't her a peep until 3:25 which is when she started crying very loudly.
New developments: The doc was getting concerned about Charlotte's head pain last night so she ordered a CT scan as soon as possible. At first the nurse, whose name is, I kid you not, Princess, was telling me the only CT machine available was the one in the ER so she was warning me about the sights and sounds one might experience there on a weekend night. I even fashioned a blindfold for CJ under the guise that the lights might hurt her eyes, which has actually been the case lately. At the last minute they sent us to the third foor where she had gotten them before. That was a much calmer ride. CJ slept through most of it.
Now we're waiting. What the pediatric surgeon told me was that they think her ventricals might not be working as well as hoped and they might actually have to go in again to install a shunt after all.
I'll keep you all informed as I can,
After a much better night of sleep, I feel like a human again.
Dr. Tye came by and told me Charlotte's CT scan looked the same as before so no shunt. That's good news.
Bad news is he thinks it could be aseptic menengitis (kind of a lining irritation after effect of the surgery). They're going to do a spinal tap today to relieve pressure.
They momentarily got CJ back on morphine while they checked to see if the Tylenol 3 was masking the fever symptoms. It wasn't.
Nurse Dana is on the edge of getting a nickname but I can't quite put my finger on what it should be.
If you're planning to visit, please be ready to either wait or not get much action out of her. She'll be sedated for the spinal tap and none knows exactly when that will be.
Spinal tap has been done, fluid was drained, pressure was released. They moved her back into the PICU for the procedure and now she's back in her room sleeping soundly. She slept through the move and most of the prep until one of the docs (I call her Dr. Raging Bull) manhandled her onto her side.
I appreciate Dr. Tye's bedside manner more and more whenever I come across someone who seems to have forgotten that the piece of meat in front of them is a person. I constantly have to weigh whether I think a docs/nurses procedure is so important that we need to disturb CJ. The night nurses are so amazing at NOT disturbing her, they have really spoiled me for the other medical professionals who are very capable and proficient at what they do but are a bit tunnel visioned on the procedure sometimes.
I'm sure they have a knickname for me.
So anyway, she woke up as they moved her onto her side and nearly panicked. Probably because she was in a new room and she was pretty sure that being on her side meant that something bad was about to happen to her. Fortunately I was there and when she saw me, she reached out with her right hand and put a death grip on my finger. She made me sing Frosty the Snowman to her and I had a flashback to the moments before her first surgery. I had some real trouble keeping it together. But it was enough for her and she settled down pretty quickly. Then the sedative was administered and she was out. Still took me a moment or two to get my finger unlatched.
After the procedure, Dr. Raging Bull tried to wake up CJ but she wasn't going for it. The doc asked her if she wanted to sleep some more and, with eyes closed, she nodded, "Yes."
For the record, the doctor who actually performed the "LP" (lumbar puncture), Dr. Czynsky, was great, overexplained everything to me, and afterward, showed me the vials of fluid that came out because he knew I like to see that kind of stuff. :-)
In a few minutes it will be 2 hours after the procedure and we're going to wake her up to see if she still has a headache. If she does, it iisn't the fault of the spinal pressure. It would be great to hear her say, "I'm hungry" and not, "My head hurts."
There was another "older" Doctor there who was teaching a couple of med students abut LPs so they'll be ready whenever someone wants to listen to some classic rock albums...uh wait...
It's pretty cool to be part of the education of the next generation of doctors.
Countdown to homecoming
I don't have much to update on the hospital front, but on the home front we are moving right along. The house is just about ready for CJ's homecoming. We have moved the daybed from our guest room downstairs to the dining room, pushed the dining room table to one side of the room, and emptied one of the buffet cabinets. This will give us plenty of room for all her "stuff". We are planning to hang her many get-well cards and posters on the walls. I think we have secured a bed rail too.
Much thanks to Juli and Geoff Tubbs. They have a pre-made and ready to go wheelchair ramp at their disposal. Roger will be contacting them about getting it to us and I was gently reminded by our neighbor and town councilman to double-check with the city about building permit stuff (Thanks, George!). Just in case...
I expect that tomorrow will be another endless day of meeting with doctors and therapists and we are hoping that she will be ready for a transfer home on Tuesday. May take a lot of coordination but it will happen!
It was so nice to be at church today. We had boy and girl cousins baptized today. Welcome to the church family, Brown and Aliyah! The baptisms were beautiful and it was that wonderful combination of comforting and overwhelming to be "home". So nice to see everyone and get well-wishes, wise words, and hugs.
Now I'm at Romp n' Roll. Phyllis is doing some touch-up painting and I'm doing the books. Ugh...a necessary evil of business ownership, I guess. Hopefully we will get to the hospital to relieve Roger soon.
Happy V-D week.
Much laughing tonight as she watched Finding Nemo and Shrek. She also ate a TON more. They weighed her tonight and she came in at 15 Kilos. She weighed 13.7 when she came in the hospital! Guess that hospital food (and the choco chip cookies...) are pretty good.
They did give her a bit more morphine tonight. Supposed to help with her head pain. She was also supposed to fall asleep soon after her bath but still awake. Eyes glued to Shrek...
Hopefully we will have a peaceful night in preparation for a busy day tomorrow.
Sleep doesn't come easily
Ok, so my child is seriously strange.
The nurses gave her medicine (including morphine) at about 8:30 (I think?) and then she had her bath. We thought, Ok, she will be asleep before we know it. Well, it's 11 PM and while she is mello-yello, she is most definitely not asleep. She did get the munchies and ate 5 more pretzel sticks and is now munching on a bowl of dry cheerios. She also keeps asking to hold new stuffed animals (she is literally holding Dora, Pooh, and her two beanie babies ALL AT ONCE!). And every once in a while she loops into random statements like, "Mommy and Daddy work at Romp n' Roll and Daddy teaches classes for me..." or "I really love my animals mommy....more cheerios?". She's hilarious! The nurses are astounded that she's still awake. My daughter, the stoner!
Meanwhile, I watched a whole episode of Desperate Housewives online and checked up on Facebook. I don't know about my doped-up child, but mama is tired.
Just remembered to turn on the Starry Night lullaby CD so maybe that will help...
Saturday, February 7, 2009
Another long post lost to the etherworld...Not sure what happened. Let's try it again.
The most important event of the day: It's Peter Gabriel's birthday! "All the monkeys in the zoo wish you Happy Birthday too. Happy Birthday to you!"
Kind of a dicey night for both of us. For CJ because of head pain and rough diaper changes and for Daddy because a customer delivered a package of chocolate macadamia nut cookies to Romp n' Roll and he just HAD to eat almost half the package and now his tummy is rebelling. My own damn fault.
Cj and I are viewing what promises to be the first of many viewings of Dora's Christmas. I reiterate what Rachel said: The things we do for our kids!
As for the ramp...Barclay, if someone could see if the ramp is available, we could keep that on standby until we have a better idea of the demads of our situation. Then we could use it temporarily until the permanent ramp could be built.
It would be an honor to have the permanent ramp built by the drama shop.. Having scampered around on many sets built by the R-MC crew, I know the ramp would be sturdy. James, I know it won't feel complete unless you can put castors on it but I'm hoping you can make that sacrafice. Maybe we can hide a trapdoor smewhere! :-)
Here's the broken record again...The support we've received from all over, but especially from the Randolph-Macon College community has mind blowing. It will take us a lifetime to pay it back/forward but I guess that's how it ought to be, eh?
Gotta go stop Swiper...
A good night's sleep in my bed-sweet-bed and now I'm off to Romp n' Roll for a full day of fun. After being away for three days, the house looks FABULOUS (thanks, Phyllis) and we are working on creative ways to redo the dining room to allow for CJ's new space. I think it will all work out nicely.Thanks for all the RMC offers for a ramp of some type. I think we may be taking you up on that.She had a pretty good evening before I left. The head pain is still fairly constant but when she is well distracted, it's minimal. We still don't know what is causing her head to hurt as the CT scan shows nothing that should be causing pain, but I also wonder if her belly pain just radiates up to her head...or if her general discomfort has turned into "my head hurts" and that is her new phrase for "I'm in pain....get me outta here!". Aunt Phyllis did get some pretty major laughs out of her before we left so that was good.More news later...same bat time, same bat station.Rachel
Friday, February 6, 2009
Waiting for word from the Docs
She has had a very good night with only minimal "wakefulness". Mommy was definitely sick of watching Diego last night but it made her happy...the things we tolerate as parents!
At the moment (8:15 AM) she is still snoozing away peacefully. We are waiting for the doctors to call her for another head CT. Assuming everything goes well, we will begin the discussion about removal of the ventric line. This is just part of the seemingly endless process that counts us down to home (we hope). We will also be able to give her hair a REAL washing when the ventric comes out. Oh joy!
I want to give a small shout-out to the Shultz family. As part of the wonderful care package they brought for us, there was a book of "grown up" puzzles (crosswords, etc.). This has been a great source of amusement for Roger and myself. A good way to pass the time.
I personally slept through Roger's radio appearance so I hope it went well.
On for another busy day.
Another very busy day. Her head CT looked great so they came to remove her ventric line today. One less tube to conten with. She also got a bath and a great hair washing! She is resting peacefully now.
Occupational Therapy came to work with her earlier today. That was a lot of hard work. I think I got a taste of how hard therapy is going to be for her. It was definitely tough for her to move that left side and coordinate bilateral movements with her hands. And of course, in stubborn Charlotte fashion, she fought finishing the task. She knows how hard it is and I am sure it is very frustrating for her. Lots of tears and a very patient OT.
We also had a visit from Dr. Robinson, the rehab specialist. Based on the discussions he has had with the team, they continue to lean more towards outpatient therapy. This will, of course, mean a lot of work but we will be working with a great team. She will need a wheelchair and perhaps a ramp at home (a project for grandpa?). She might need a bed with rails at home but we don't know yet. There is a lot of question about how much mobility she will regain on her left side. She may always have some weakness but she should be able to regain some if not most of her mobility.
Discharge is still looking much like Monday or Tuesday.
It seems that on the food front, I think we have things well covered till then. There is plenty of food in the freezer at home and we have at least a couple meals left to eat from here at the hospital.
I will be setting up a Care Calendar in a few days that will have information about specific needs we may have for child care, meals, errands, etc. I will let everyone know when that is ready and you can jump in to help.
All for now...gotta go grab lunch and caffeine...
Thursday, February 5, 2009
Prayers for Charlotte
Another good and busy day. She was up at 4:30 AM (yawn!) complaining of pain but early morning PBS seemed to help. We put her in her wheelchair to eat breakfast this morning and she wolfed it down. Then it was time for her head CT. Auntie Retta and Aunt Phyllis accompanied her and it seemed to go fine. It was quick so she didn't require sedation. Then she napped for the rest of the morning.
Lunch came and she ate again. Then Shaaron visited for PT (i.e. torture) time. She worked really hard and Shaaron continues to be impressed with her progress. She is leaning more towards outpatient rehab now (yay!!!) Dr. Tye also came by with the results of the CT scan and it looks like all of her ventricles are functioning normally...or as normal as possible. She should not need to have a shunt.
Lunch/dinner arrived from the Ashland Community Preschool with yummy goodies all around. Charlotte napped so we were able to steal away for a meal. She is now entertaining guests and working with the OT.
With all this great progress, it still looks like a discharge date of maybe Monday or Tuesday. We are keeping our fingers crossed and optimistic that things will continue to proceed well.
Two of Charlotte's former teachers from Tuckaway stopped by to visit. They mentioned that they pray for her and family in Venezuela pray for her every night at 6 PM. They asked if we would also lay a hand on her at 6 PM for a blessing...and anyone else that would like to do so. 6 PM is the CJ prayer time!! (not that you can't any other time as well)
All for now..
Quick note that few of you will get in time or could even take advantage of if you DO get it, I will be on the air at WHAN 1430AM tomorrow at around 7:15am to talk about this whole thing. I used to have a show there and still help out sometimes with parades and all that jazz.Sometimes I would take Charlotte into the studio with me as I did my show. Charlie "I Cry" Taylor, a frequent guest, gave her the nickname "CJ the DJ" so they're concerned about her like everyone and they want to hear about her progress.Sorry, they're not quite advanced enough to have it on the internet. I'll try to record it though. The number is (804) 798-1010 if you want to harass us while we're on the air.Rog
Wednesday, February 4, 2009
Life in the hospital post-op
She had a very busy morning. She was awake from about 3 am-5 am, just fussy and "not sleepy". We drew some pictures and she finally went back to bed.
After sleeping in until about 8:30/9, she fed herself a BIG breakfast (eggs, sausage, waffles). Dr. Tye clamped her ventric today so we will see how she proceeds with that. If all goes well, we could be released by Monday. PT came by and she worked on walking, standing, and sitting. Shaaron is recommending in patient rehab for now but if she continues to progress enough by our hospital release date, we could look at outpatient rehab. Inpatient would be at Kluge (Charlottesville). Outpatient could be in Richmond at Children's hospital.
She also has a urinary tract infection (oh goodie) so she has started a round of antibiotics. Not so unusual given the fact that she had a catheter along with all the messy diapers. She has actually told us a few times that she needed to go potty and has been making trips to the toilet. What a trooper!
She also had visits from her preschool teacher and Child Life today...all working to keep her engaged and energized. She ate lunch sitting in her wheelchair today ad has done a great job overall. Now she is "chillin'" with Dora and watching some episodes in bed while downing more chocolate milk!!!
That's all the news we know....
PS: Much thanks to the Carpenter family for the yummy meal last night. The pork loin and vegetables were fabulous!
Before I proceed further with the Charlotte update, thanks again to the Plank family for a yummy home cooked (and healthy!) meal. Such a blessing.
Charlotte ate a great dinner as well of spaghetti, meatballs, broccoli, and peaches, and (of course) more chocolate milk. She also pooped on her own again. Yay, Miralax!
She has been "vegging" on the tv this evening but that's just fine as mommy needs some time to veg too. We heard from the neurologist that she will have a CT scan tomorrow morning. Her ventric clamp went well today and they will be checking tomorrow to be sure her ventricles are flowing properly with no blockages or mis-flow.
While she occasionally complains of pain, it is not so extreme that it incapacitates her. I managed to give her a sponge bath and comb most of her hair. She's looking better all the time!
Now I'm off to read my Entertainment Weekly while Strawberry Shortcake blares on the TV for Charlotte.
Getting used to this routine
Rachel is pulling a three nighter because I need to be places in the mornings which is good and bad. Good because we're getting more and more back into the swing of things but bad because I only got to see Charlotte for about an hour and a half today. What was very nice was that she is looking and acting more and more like Charlotte everyday. I even got invited into the bed to snuggle a little (collective, "Awww!") Of course I was nearly falling off the bed and dosing here and there on top of that so I was in serious danger of rolling off and into the jail-cell style toilet next to the crib.
Tomorrow morning I resume my duties for Romp n' Roll To Go at Primrose School (thanks so much to Babz for covering for me the last two weeks). I get addicted to my kiddies and it will be very nice to see them all again.
We'll be starting our RNR2Go up in Ladysmith next Tuesday which is very exciting. If you're up in that area, stop by Miss Alyson's Countryside Daycare and say hi.
Sounds like a Romp n' Roll commercial, eh?
Now here comes the next fun part...To all of those people who were willing to sit with/watch CJ once in a while, there's a good chance we'll be needing that soon. She might (emphasis on "might") be released from the hospital Monday or Tuesday. With Rachel and I both trying to keep RNR moving forward, and other events coming up, we could use a few good volunteers. I'd like to ask folks to please reiterate their willingness to participate and what times they may be available including possible (but not probable) overnights. I'll pull out the calendar and start signing people up as I can. Thanks in advance.
Then again, everything could change at a moments notice so take it all with a grain of salt. :-) I do know that when we get serious into the rehab and chemo sessions, all bets are off,
Classes at RNR were great tonight and I even got to see a mischievous side to Miss Audrey that I hadn't seen before. Love to see dem kiddies growin'! Also love having a functional water fountain in the back. Thanks Daddyo!
Tuesday, February 3, 2009
Getting used to the new routine
CJ has weathered the immediate crisis but some of the hardest road lies before us. One of the worst things is not being able to make a schedule of any kind past this week. We still haven't heard from Dr. Kahn as to what to plan and it's kind of driving us bananas. We're ready to get our lives back together and we're going to start cashing in a pile of those offers to help but until we can actually plug real events into/ an actual calendar, we're stuck. So we sit here spinning our wheels in the meantime.
Not quite spinning our wheels. We're happily getting re-involved with Romp n' Roll. Our January Early Bird special went pretty well and it felt great to make volcanos again in Silly Science.
The gifts/cards keep coming in and so do thoughts and prayers from all over. Keep spreading the word. The stuff that doesn't make it into the Lifertime movie of the week is still ahead of us.
I'd like to be mushy again for just a moment and say nice things about my wife. Although this has been very hard on both of us, she has taken the brunt of it; mostly because she's Mom and that special bond between a mother and her child is strong and also because she has had to really let go and delegate jobs out. That takes real strength. I saw it when Charlotte was born and I'm seeing it now. There's always the time or two when I come in handy for a shoulder to cry on or a good boot to the head but she is pretty amazing overall. Don't tell her I said that.
Good morning. I think the nurses here will be very happy about the fact tht I won't be here the next three nights. I'm pretty sure I was soring like a jet plane. (there's a song in there somewhere) How Charlotte sleeps through it, I'll never know.
The night went relatively well. She didn't get to sleep until pretty late and one early morning med student decided she just HAD to turn on every light she could find so she could examine CJ. Nurse Amy kind of ran interference and kept the exposure down to a minimum.
I must say I was nervous about a possible stepdown in quality of care but it really hasn't materalized. In fact, Nurse Amy came in at my request and started to work on Charlotte's hair. It was getting very matted. She only got through about 1/2 of it when CJ finally pooped out and fell asleep mid-detangle. We'll tackle the other half today sometime.
Speaking of pooping out, that happened yesterday too. I wasn't here for the blessed event but I understand it wasn't as dramatic as last time but certainly as voluminous!
Did I mention, chcolate milkshakeshakes have officially been added to the diet plan!? WOOHOO!!! Not sure what made me think of that. ;-)
Looking for reviews of virus protection software. I think the new Eee PC has goobers in it and I want to get a good package that will get all the trojans and adware and junk.
I appreciate Roger keeping things updated. As many of you know, I have hit an emotional and physical "wall" this week. I can't believe it has only been two weeks since our world was turned inside out. It seems much longer...
Charlotte is improving every day and I really got a kick out of her last night. She ate a wonderful dinner of spaghetti, meatballs, green beans, oranges, and (of course) pudding and nilla wafers. THEN she topped it off with about 7 (and that is no exaggeration) homemade chocolate chip cookies courtesy of the Plank Family. Thanks so much! We also offered a cookie to nurse Robin and she said, "I can see why Charlotte keeps asking for more! YUM!".
With the calorie intake, we were able to drop her night feedings which is wonderful. One step closer to getting the NG tube removed.
I hate the waiting game. So frustrating. I'm never good at waiting for things anyway. I'm a planner and just want to map it all out. I know that even after we get a roadmap, it will just be a suggested route and "subject to change" but at least it will hopefully help us get things together on the home and business fronts.
I will keep this short as I am ready for lunch and a brief respite from both hospital and Romp n' Roll before returning tonight.
Much thanks to Roger for pulling a double shift last night and for always being there to listen to me. Even at my irrational worst...
First plans of Charlotte's treatment
Dr. Khan stopped by this evening and gave a cursory summary of what is to come. They have reviewed some possible protocols based on the tumor pathology, etc. and want to avoid radiation if at all possible (yay). Instead, we will begin with three rounds of "regular" chemo. These are usually 3-day stints at the hospital and spaced about 21 days apart. Then she will have another MRI. Then she will have some higher dose chemo combined with bone marrow transplants. They will use her own stem cells for these. Hospital stays during this time will be longer (1-2 weeks). After three rounds of this type of chemo, we will have another MRI. At that point, if there is still cancer present, we will discuss other options including possible radiation; however, he is fairly optimistic/confident that this will be sufficient to combat what is left of the tumor. At minimum, the course will take about 6 months. Of course, this is subject to change based on any changes in the tumor, Charlotte's overall health, and any other speed bumps we may hit along the way.
None of this will start for at least 3-4 weeks. They like to wait until her post-surgery body is as healed as possible since the chemo will stop growth of any "healing" or new cells. There is a possibility that we may go home in the interim. Still waiting for word from Dr. Tye although he has checked in regularly and seems happy with her progress.
She had a very busy day again with physical therapy getting her up and out of bed with lots of movement. Plus, there was more poopie today (all on her own!) and LOTS of eating. The NG tube came out which I'm sure makes her more comfortable. The flip side is now she has to take all her medications by mouth and she kinda resists that. Some of them don't taste so good. Thank goodness for milk-shake-shakes to wash them down. Of course, she doesn't know that her shakes are laced with Miralax! Ha ha!
Sleeping now and peaceful. She had a great day and much thanks to Grandpa, Juanita, and Kolbey for entertaining her this afternoon.
I'm tired but otherwise "ok".