I'll Try

Courtney met with the dietitian today and she's taken another step closer to having her feeding tube out, her goal is to finish more than half of each meal in order to start skipping ProBalance feedings. Tonight she ate a hefty dinner of chicken cordon blue, green beans, potatoes, fruit and chocolate pie. She was able to skip her final tube feed of the night.

We went for a dip in the pool afterward and even though she was feeling tired she still gave it her best. Come to think of it, Courtney's will is one thing that impresses me most about her, "I'll try" are the two words you'll likely hear when asking her to do just about anything. She's had plenty of reasons to quit or break down emotionally over the past three months and she's held it together throughout. Nobody thought Court would progress as far as she has this soon and still maintain lofty goals for herself.

I'm headed back to Burlington tomorrow to touch base with friends and the Support For Courtney crew as well as prepare for Benefunk, which is coming up this Wednesday night.


Here's the poster for the event, we'll be plastering them around Burlington and UVM over the weekend. We created a Benefunk event on Facebook (that newfangled networking site that all the kids think is so supercool these days) and hundreds of invitations have been sent out already. Keep RSVPing everyone, we want Metronome packed, no excuses.

-Sean

Malaise

Since Courtney's shocking event a week ago Wed. she hasn't had the stamina or determination she had prior to that. It's certainly understandable but very disheartening. Today she is lying in bed, too weak to do anything, so no PT for now.
On the plus side, her appetite is slowly returning. She has gained 2 lbs. and is up to 115 lbs. now.
For a 5'8" girl, that's quite thin. She walked a long way yesterday with a walker but today it's the wheelchair.
We are gathering our information and talking with Court about how she feels about replacing the defibrillator. Regardless of what decision she/we come to, the old defib will be removed soon. It's a very tough decision to make with pros and cons on each side.
Please keep Courtney in your prayers, esp. at 7 p.m. We love you Courtney.
Mom

11/28 S.F.C. Meeting - Last Meeting Before the Benefunk!

For those coming to the S.F.C. meeting tonight, the focus of discussion will go as follows:

- Tying up lose ends for the Benefunk.

- Finish developing our outlined approach to businesses and individuals for silent auction items as well as $ donations. Picking a date and 'to-do' list for the silent auction.

- Winter Festival options and determining next steps.

- Discussing the future of S.F.C.


I encourage all to stay involved, because without everyones help S.F.C. wouldn't be. It consists mainly of full-time students and others with full-time jobs. A little effort from everyone goes a long ways. Look where we've gotten already! Thanks so much to everyone who has participated in the organization of these fundraising events and those who have donated to our cause. Courtney has made an incredible improvement and hers and her families determination to fight for her full recovery is so inspiring. Keep up the good work!

See you all at the meeting!

-Amber

11/27

Kind of an up and down day today. All of Courtney's therapies went well, she worked with the light box again in occupational therapy and was able to pick out the color yellow which she wasn't able to before. She was exhausted by noontime and tried for a nap, it was a hard day of work especially coming back to full-time therapy.

-Sean

Back on the Crotch

As we had hoped, Court was cleared by Dr. Kim to leave Catholic Medical Center this morning and we've just arrived at Crotched Mountain. It's good to be back.

We've had a few days to discuss the pros and cons of having a defibrillator implant with the doctors, with each other and, of course, Courtney. The only decision that has been thus far is that she keeps the defibrillator deactivated for the time being and within the next six weeks she will have the detached lead wire removed from her heart before tissue grows over it.

The debate for Courtney will be whether to opt for a brand new defibrillator implant or move on without one. We covered many questions over the holiday weekend, but the arguments are complex for both sides (I'll try to break them down as we progress). The defibrillator topic is also not one of Courtney's favorites when she's given the choice between risking another cardiac arrest or implant malfunction.

She's happy to be back on track for rehab, the mountain is comforting to her and much more of a home than a hospital. Our stay in Manchester was a cause for reflection, we can count our blessings that we able address this problem early on in her recovery and not years down the road.

-Sean

Hurry up and Wait

It's a hopping Saturday night in the booming metropolis that is Manchester, N.H. I was thinking of sneaking Court off the telemetry floor to the movies or a bar (I wonder if she'll want to play darts). We'll be here through the weekend and at least until our meeting with a resident cardiologist Dr. Kim on Monday. We want to learn more about the risk factors surrounding Courtney's heart condition and weigh the decision to have a defibrillator implant.

One activity that's helped us pass the time has been developing a timeline of the past two years of Courtney's life, an assignment from her speech therapist. Her memory is getting sharper, we ran through most of 2006 smoothly and we've started recounting 2007. It's like playing a game of "this is your life" and I'm finding out more about my girlfriend in a few weeks than I otherwise wouldn't have learned in few years. Luckily, using the power of the Internet, I'm able to dig up some helpful clues like her travel blog from Belize (link here) to spark her more recent memories (it's ironic that we are now watching 50 First Dates in her room, although I like to think I'm handsomer than Adam Sandler).

This weekend's visitors, Amber, Els and Meltron should also be able to help to help dig out some of her deep dark secrets. I think a game of Catchphrase can distract her from feeling confined in the Hospital.

-Sean

Killing Time with Dumb Videos

Court's doing much better, we've been killing time in her room, she's resigned to the third floor because she needs to stay within range of the heart monitor. She's still moving around and had therapy this morning, but she yearns to be back at the Crotch. I'm glad we're still immature enough to appreciate the name, it's great when the computer voice on her Mac reads it aloud.

Speaking of the Crotch, I broke out the old video camera earlier in the week and caught some gems.



It's not the best camera work, but I'm sure it's nice for the folks who haven't been able to see her recently.









-Sean

Misfire

Unfortunately our Thanksgiving plans have fallen through, but that's the least of our worries. Courtney had a big scare last night when her implanted defibrillator started to malfunction. We were walking down the hall in Crotched Mountain last night when she jumped with a spiked pain in her chest and yelled "oh God." After two more jerks we rushed her into bed, the nurses and our physician checked her out and Court calmed down after the pain subsided.

We suspected a device malfunction as the reason for the pain in her chest. Her vital signs checked out fine, her heart rate, while raised from the stress, was no where close to going into another arrest. We called in to Medtronic, the defibrillator's manufacturer, and a technician was headed to Greenfield to check on the device.

We thought the worst was over, but it was just the beginning (eye of the storm type stuff). After about an hour, we brought Court to the bathroom and on the way back the pain hit her again. This time is was apparent she was being shocked as she was thumped up and down in bed screaming in pain. The nurses called 911 and paramedics rushed her to the emergency room at nearby Monadnock Hospital.

At Monadnock, the Medtronic tech turned the device off and doctors monitored her heart rhythms. The technician took a reading off the device and in all Courtney was shocked more than 50 times, each shock up to 750 volts, about six times the voltage of a wall outlet. She was scared to death that the defibrillator, a machine that's supposed to help keep her heart in check, is actually hurting her and she has no control.

We stayed at the hospital for hours trying to get to bottom of things, figuring out a plan and also calming down a traumatized Courtney (Doug, Julie, Martha, Marty and I in tow). She was frantic, just waiting for the next shock to come. She yelled to have the defibrillator stopped or taken out of her well after it was deactivated.

A chest X-ray showed that a lead ("leed") wire running down into her heart was out of place. The device was incorrectly reading Courtney's heartbeat at twice the speed it was actually beating. When she reached over 100 beats per minute, the device registered 200 and began shock therapy.

We decided to bring Courtney to the New England Heart Institute at Catholic Medical Center in Manchester for observation. She's in a hospital bed, still fairly miserable, but safe for now. We'll likely be here through the weekend. At least there's free turkey and mashed potatoes, I'm sure she'll be up for some stuffing at dinnertime.

We'll watch over our girl and give thanks that she's pulling through this.

-Sean

Home at last....for Mom anyway..

Well, I finally made it home to Waldoboro, Me. this past Wed. night. I was exhausted. It was a five hour drive from Greenfield to home. "Can't get there from here" comes to mind. Anyway, it's good to be home for a couple of days, even if I don't have a working toilet or clothes dryer.

Things needed to be buttoned up for the winter here and I have already put away the lawn furniture and garden items, so now it's on to the storm windows. Luckily there are only four to do.

I can't believe how strange it seems to be here without the rest of the crew. I thought I'd be happy to be here but all I think about is Courtney and how she's doing. I know she's doing fantastic and her progress is lightening fast but I want to be there to see for myself. I really miss her and it's only been two days away. Marty and Sean are keeping her company and tormenting her to no end I'm sure! She loves all the tickling and teasing they dish out. It keeps her on top of things and makes her smile that phenomenal smile of hers!

So I won't bore you with any more blah-blah from this end. I just wanted to let people know where I was. It hasn't been easy to post for the last week because we didn't have a password and account at the Mountain yet. But we do now so hopefully things will be added in a more timely fashion. Bye for now. Pray for Courtney's vision and continued progress!! Thanks!!

Love, Julie/mom

Supper Time

I've made it back up to New Hampshire and we're about to sit down for some lasagna. Already Court's been outside a few times today, we went into Peterborough for some supplies, dog food and beer (only the necessities). Courtney's been on some field trips since I left, so we have some catching up to do.

-Sean

Things are Going Swimmingly

The prototype Support For Courtney.com wristband, note the Costanza-esque hand modeling abilities

I talked to Court on the phone last night, she told me that Monday's therapy went well and that she swam in the therapy pool at Crotched Mountain for the first time over the weekend. The pool is a large platform that lowers down into five feet underwater with a ramp for aquatic wheelchairs. Julie said Court had a lot of fun kicking and splashing and that walking came much easier in the water.

Court's also been scaling the food pyramid with the therapists clearing her to eat ground meat she's a step closer to getting that hamburger she's been dreaming of for months. We'll have to bring her to RiRa for dinner when we make it back to Burlington.

Our main concerns to be addressed in this next level of therapy are her vision, short-term memory and weaker left arm in addition to continuing her progress in eating, exercising, etc. Her memory seems to be strengthening, her left thumb is more dexterous and we'll arrange to meet with a neuro optometrist in New Hampshire to evaluate her eyesight.

The Support For Courtney Foundation is really clicking on all cylinders with Benefunk locked in for December 5th at Metronome and a silent auction in the works. I was looking to have an order of wristbands like the one pictured above in time for the concert. I found a decent price at wristbands-with-a-message, but if anybody has ordered wristbands before from a different source please let me know.

Feel free to post any questions about Court's rehab, the fundraiser or ways to help out.

-Sean

Crotched Mountain Photos

_
It's day four up on Crotched Mountain and we haven't been attacked by any yetis as of yet. Court's therapies have been going great, I wanted to show a couple of my photos to give everyone a sense of the facility that we've been raving about.


Here's Courtney and myself. They won't allow you up the mountain unless you have a proper mountain man beard.



We found a secret tree house on our walk the other day, it's beautifully constructed with wooden planks and a skylight.



There's a playground across the field from our room in Hayden. I'm looking forward to swinging when it's a reasonable temperature outside.


There was a vicious pack of wild turkeys guarding the media center. I must be a city boy, I took at least forty photos of these birds.



We warmed up inside the greenhouse at Crotched Mountain, we saw the leftovers from the pumpkin patch and fall harvest as well.


I had originally thought the "mountain" in Crotched Mountain might be figurative, but I was wrong, there are a whole bunch of big ol' peaks surrounding the rehab center. The logo is some sort of magical wind.


Here's a sneak peak of Court's room, it's set up just like a dorm room with a bed and a few pieces of furniture. The stuffed dog is for her special pig-bear therapy (you'll have to ask Aunt Marti about that).


She sports some silly faces outside. While I always get Courtney's permission first, she still wonders why I would want to take her picture when she's still recovering. I hope she can see them one day soon. We're testing out her vision, she checks out on seeing light and distinguishing the color of lights, but she still can't see objects or faces. We're working with the Crotched Mountain doctors on a vision therapy plan.



We did a little exploring yesterday and found a candle pin bowling alley on the basement level of the athletic campus. She out-bowled Doug and me, using the bumpers to her advantage. There's a ton of activities for Court to do here, I'm anxious to hop in the therapy pool with her sometime.

I'm headed back to the city today for the next week, so everyone will have to send their love in my place.

-Sean

Mark Your Calendars! Benefunk, T-Shirts and Chocolate Bars

This weeks meeting went really well. As usual, thing seem to be progressing quickly and smoothly. Here are the most recent updates.

CONCERT:

The dates been set! Here’s the nitty gritty:

December 5th.
9 pm -2 am
18+
$5 or $6 donation fee at the door
The benefit of The Benefunk, once $125 goes to the sound guy, all profits go directly to the Support for Courtney fund as well as all sales of marketing items!

The poster is in its finishing stages and despite my promises before; we aren’t going to post it on the blog until it is finished.

Band Line-up: (order is not set)
IAMYOUARE
Brothers Through Glass (?)
Bone Cobra (or other)
The Burley Jacks
Chain Link Gun Love (?)


SILENT AUCTION:

Still in the early stages but will be the next big thing. We are thinking sometime around Valentine’s day.

CHOCOLATE BARS:

The bars should be ready any day now and we can begin selling.

(the blurb)
Robin Pierson of Stowe Maple Products used a credit she had at Linda Grisham Chocolates (a Burlington Business) to purchase 200 dark chocolate bars for S.F.C. As soon as they are ready we will add our label, made and donated by Emily, to the back of the bars. We can sell the bars directly through businesses and/or to our family and friends as holiday gifts at $3 a pop, all proceeds go to S.F.C.

T-SHIRTS: (***IMPORTANT***)

Shirts have been lined up. The only thing holding us up now is deciding how many to purchase. It would be incredibly helpful if in the next two days EVERYONE interested in purchasing a shirt could let me know how many and what sizes you would order. As soon as you let me know I can decide how many to purchase.

The urgency: The company I am looking at is currently having a promotion where I can buy packages of 12 in 1 size and color for a good deal. This promotion ends Nov. 15th so the sooner I hear from you the better. I’d like to have them done at least a week before the concert (that’s about 2 weeks from now) so we can wear them and raise awareness.

Just shoot me a quick e-mail with your name, number of shirts you want and sizes.


IN THE WORKS:

-Ski/ride event
-Bike event
-Bottle drive
-Midnight/moonlight hike

Thank you everyone who has contributed to make this happen.

If you have any suggestions, comments or you want to be added to the mailing list; you can e-mail me at muzik33@aol.com

Made it to the Mountain

We've spent our first day up in Greenfield, NH. Courtney rode shotgun in the CR-V and made it through the trip without incident. Wireless Internet is a bit more scarce on the mountain compared to the other hospitals, but I'll post more info when I can. Our first impressions: it's an expansive facility, there's a multitude of activities and therapies, the staff is uber-friendly, Courtney's room and our accommodations feel a lot closer to home and the food is excellent.

On the road up to Crotched Mountain, we passed by the site rumored to house the world's largest trebuchet. There must be some madmen living up on this here mountain.

-Sean

Headed North!

Well, we are headed out of here to Crotched Mountain tomorrow morning. We are all very excited to move to the next step forward of this long journey called recovery. Court had an off day today, not sure why. She started off wide awake and ready for the day. By ten o'clock this morning she was feeling dizzy and disoriented and very tired. With no tranquillizers or sedatives last night I thought she'd be ready for the day's tasks but she never got out of her "funk". She has been complaining of heartburn since last night so we hope that is only temporary. We are mostly packed up and ready for the move. I pray Court has a restful night with her Dad tonight and the trip goes smoothly. We will keep you all informed after our arrival.
Best to all, Julie

An Evening with Miss Maine

Courtney and I shared a relatively quiet night and early start to the morning, promptly at 6 a.m. (any complaining on my part was met with "you signed up for this," which I suppose is true). She needed all the sleep she could get with today's busy slate.

We started off in speech therapy with Courtney eating solid foods for the first time: a piece of wheat bread and peach slices. She was able to chew the food, swallow and wash it down with a bottle of water between bites. I never realized how much effort goes into eating, aside from chewing and swallowing, the tongue swishes back and forth about eight hundred times (a rough estimate).

After breakfast, Courtney walked all over the hallway in physical therapy and later worked on stretching exercises. She has really improved her torso and neck control, she can sit up straight longer and more effectively squirm around in bed, although she still winds up in positions that would make a yoga instructor cringe.

With the weather holding up, we went for our regular stroll in the park adjacent to Spaulding. We listened to the trains chugging by and walked past a flock of ducks. I find that a duck's opinion of me is very much influenced by whether or not I have bread (we also listened to Mitch Hedberg's comedy album for those who recognize my plagiarism). Courtney had a good time, I asked three times before she agreed to come back inside.

Our case manager John let us know that we are still on track to head to Crotched Mountain, now set for Wednesday or Thursday, rather than tomorrow. Courtney would be there yesterday if it were up to her, the staff at Spaulding has treated us very well and we're truly thankful. Everyone is impressed by her progress and happy that she's taking the next leap.

On the flip side, I'm very impressed with the progress I've made in Guitar Hero 3 which has taken up the majority of my night. I wonder if we could work XBox 360 into Court's rehab regimen, I'll run it by her.

-Sean

10/31 Meeting and Events Update + Volunteer List

So glad to hear you got in to Crotched Mtn. Courtney, though I'm not surprised! I look forward to seeing you in a place more your style :) Sean, make sure you throw some Hedberg in the mix, I bet it will ring some bells.

Posted below is a summation of our discussions at the 10/31 meeting and a volunteer list for those who still want to contribute to pull together loose ends for the upcoming concert and other events. There are still many other points of interest, but these are the most up-and-coming events to focus on as of right now. Sorry for the length, I wanted to get those interested in the S.F.C. happenings up-to-date. Following postings will be much shorter.

CONCERT:

A date has yet to be set, but it appears sometime in early December we will have 3 bands rockin’ out at the Benefunk for Courtney. The Burley Jacks have already committed while other bands like Brothers Through Glass and Bone Cobra have been suggested or shown interest. We are waiting on a definite answer from the already busy venue, but that should soon come with the help of our persistent friends Jesse and Pete who are on top of it. Once we have a date and time, the bands can give the ok and we’ll have our first S.F.C. event underway.

Our profits at the show should consist of ticket sales, t-shirt sales, direct donations, a coin drop and stickers. If anyone has any other suggestions contact me via e-mail (I’ll post it at the end).

Our main marketing method for the show is word of mouth and tacking up concert posters. Cyrus has designed a mock-up poster specifically for the Benefunk (which you can see tomorrow) and once determined, he will add the band names and the date/time. Emily is working with her mom and Cyrus to get stickers made of the logo to sell/pass out at the concert and use towards guerilla marketing. At the last meeting we all agreed on a final logo design for the Support For Courtney fund (posted above).

We came to the decision that we should have a table set-up with volunteers to fill people in on Courtney’s situation, express the urgency in which the fund needs to grow and manage sales. We are also looking for a volunteer to make a tri-fold informational poster board to stand on the table as a visual at the show. We need something somewhat professional that represents the fact that this situation is very real and important, but also throw in a touch of Courtney’s great personality. Refer to the volunteer list posted at the end for other tasks.

SILENT AUCTION:

General consensus at the meeting was to have a silent auction online. This way we can appeal to both large and small donors from all over the country. There will be no cost in a venue and organization should be easier. We will need a final copy of the PR sheet to distribute and assist us when approaching businesses for donations of prizes and money. Once we find a host-site and develop a method for acquiring prizes, we can begin the door-to-door approach to request these prize donations. They can range from a physical entity such as a jacket, snowboard, gift basket, movie tickets, and/or furniture to something like a free boat ride, vacation rental for a weekend, day at the spa, gift cards, etc… There are no limits, consider your connections.

CHOCOLATE BARS:

Robin Pierson of Stowe Maple Products used a credit she had at Linda Grisham Chocolates (a Burlington Business) to purchase 200 dark chocolate bars for S.F.C. As soon as they are ready we will add our label, made and donated by Emily, to the back of the bars. We can sell the bars directly through businesses and/or to our family and friends as holiday gifts at $3 a pop, all proceeds go to S.F.C.

T-SHIRTS:

The final shirt design follows closely to the logo design. After the up-coming meeting I will post an order form for those who would like to purchase shirts of particular sizes before the concert. The price will range somewhere between $5 and $10 depending on the cost of production. I am hoping to print the logo in blue on gray and/or white shirts. After production costs are covered all proceeds will go directly to the S.F.C. fund.


The list below requests both volunteers for time and supplies if available. All efforts are greatly appreciated and recognized:

VOLUNTEER LIST:

Concert:
- 1 person to hang posters 1+ 2 weeks before concert around Church Street
- 1 person to hang posters 1+ 2 weeks before concert around South End
- 1 person to hang posters 1+ 2 weeks before concert around North End
- 1 person to hang posters 1+ 2 weeks before concert around UVM Campus

- Someone to put together tri-fold informational poster with pictures
- 2 people to help create banners and decorate before show
- 2-3 volunteers to handle public relations and run table (sales, describe Courtney’s situation and progress, and hand out letters)
-2 volunteers to keep an eye on and collect coin drop money

-Volunteers to provide the following supplies or find donors of these supplies: tri-fold poster, paint, banner paper, decorations (be creative), printing for pictures of Courtney, printing concert posters (may be all set).

Other:
-Multiple people to approach businesses, explain Courtney’s situation, and ask for prize or money donations, or leave coin drop jar
-Someone to make rounds and collect coin drop money
-Someone to write up Thank-You’s and mail them out
-Once collections begin, safe and dry location to store silent auction items

Don't hesitate to pick up even the smallest tasks if that all you can do. All help makes a big difference. Also, if you aren't able to contribute your time, your ideas are always welcome, or you can buy a shirt or chocolate bar! I hope to see everyone at the next meeting and I'm open to all comments and suggestions.

Here is my e-mail: muzik33@aol.com

Thanks,

Amber

Busy Day At Spaulding...

Hi all,
Today started off with Courtney waking up at 5:00a.m. and listening to a David Sideris CD. She then promptly fell back asleep, probably anticipating the visitors. She attended her therapy for the morning, walking up and down the hall three or four times with her P.T.'s at her sides. She was somewhat frustrated today, feeling she wasn't doing as well as yesterday. That's great considering she couldn't remember yesterday before! Much progress is being made each day!
Her visitors today included two of her profs. from UVM, the Belize contingency and the University Terr. clan! That's quite a group considering the nasty nor'easter we are in the midst of! Courtney so looks forward to her piers visiting her. I think we(her immediate family) are wearing thin on her. After all, enough is enough! So please keep in touch with her/us via the blog or in person! We all love to hear and see you! Thanks so much.
P.S. God bless Caleb and Sharyn..........they got to go home today!!!! We'll miss you more than you know......
Much love, Mom/Julie

11/2 Update

It's been another active day of walking for Court in physical therapy and she's exhausted. She had her defibrillator checked across the street at Mass General Hospital as well and everything is clear. We expect to be on the move to New Hampshire this week (assuming this weekend's Nor'easter doesn't wipe out New England). Courtney says she's going to sleep like a log tonight, which doesn't sound half bad.

-Sean

Jogging Her Memory

It's been another long day of rehab for Court which included more walking and eating. She took another twenty steps in the harnessed walker, we're really proud of her progress though she's frustrated about having to relearn tasks that came so easily two months ago. Today's menu was pureed beef, cheddar broccoli soup and pumpkin pie.

In speech therapy Rachel ran over a set of exercises to improve her short term memory. The first was a series of one paragraph stories that the therapist read and then asked Courtney to repeat. Having to keep track of the details in three sentences is difficult for Courtney, but we learned two strategies to improve her memory. The first is repetition. Repeating small details over and over helps to her to recall them. Repetition is the first strategy we learned.

The second memory building technique is association. Courtney was given a grocery list of three items: milk, bread and apples. If she forgets one or two of the items, we can give her hints like the aisle in which its found or similar products that she can associate them with. It feels like we're back in grade school (if Susie has five apples and Johnny eats four of them, how many apples does she have left? (and should she reevaluate her relationship with Johnny the apple inhaler?)) That was a double parenthesis.

Since she can't watch TV or videos, we listened to some choice stand-up comedy specials from George Carlin, Jerry Seinfeld and Chris Rock. I thought Court could just ditch the grocery list and commit to memory Carlin's list of the seven dirty words.

The final details with Crotched Mountain are being hammered out and we're expecting a move soon, closer to days than weeks. We're looking forward to having weekend visitors and keep our fingers crossed that we take the next step soon.

-Sean