Spartans, Pancakes, Taco Boats, Birthdays and Elves

We're a bit late with this post but better late than never...

October is all around a great month...never a shortage of fun for us...we kicked off the month with a happy birthday to Jim (and to our niece and nephew).  When we showed up at the kids birthday party, Mia (our goddaughter) handed us a Ziploc baggie of money.  We said, this is your birthday, what is this for?  She said, this is the money I made from selling fruit punch, I made it for Dean. We have been amazed at how many people think of Dean throughout the year and help us raise money for CF in their own way!  What a girl! Thank you Mia Mia!



Mia's fruit punch sales for CF

October was also full of all kinds of sports!  We watched Jim, Candy, Sunni & Emily pound the pavement for 26.2 miles on October 7th as they raised money for CF, reached personal milestones and goals and inspired many in so many different ways.  To read about how proud of them we are and to see some pictures, here is the link to our last blog post. 

Owen's third exciting soccer season came to a close (he's in blue).  This third year of playing proved exciting and the games were as intense as they could be for 1st-3rd graders!

Cali made the swim team and loves her new found challenge of beating her time with each race/meet.  She's comfortable swimming free and back and tried the breast stroke at her first USS!  We're hoping to get a medley in before the season ends!  Go Sharks!  Go Cal!!

Evie and Owen both competed in two Tae Kwon Do tournaments this fall...Evie as a Camo belt and Owen as a Purple.  They go to ATA in Frankfort where they learn not only self-defense but also strong character traits/values (integrity, self-control, discipline).  It's a family-oriented school with great instructors helping the kids learn a great sport and discipline!

Tae Kwon Do Tournament

Jim completed his FINAL race of 2012...the Spartan Dash (which he described as the Warrior Dash on steroids).  I was supposed to do it with him but after reading the warnings on the packet, I decided it was not in my best interest to compete in this one (well at least this year)!   Thanks Lis for capturing Jim scaling the wall!

Really?

Jim scaling the wall at the Spartan Race

PANCAKES
One of the highlights of our fall each year, is the pancake breakfast at the preschool.  The kids (and adults) really look forward to it!  This was our 7th one and the kids really enjoy the breakfast, activities and togetherness. 

2012 Pancake Breakfast

OUR 7 YEAR OLD
Owen James Burns, what a handsome young man.  He turned 7 this month and is such an amazing kid.  He's ever so sensitive to others feelings, truly wants to please, amazes us with his ability to do math in his head and knows how important being a good person is to living a full life.  He can't get enough of legos and puts together sets in record times.  We can't find enough space to keep all the legos but love watching him figure it all out.  Here is a picture of him with the 3lbs of bacon that he requested for his birthday and a picture with his buddies as they all celebrated and played a little Laser Tag.   One of my favorite memories of Owen this year is him taking an interest in Dad's cologne and bathroom counter.  He frequently comes ready for the day sporting the AFTA scent.  Reminders of how childhood goes all too quickly...


Happy 7th to our bacon lover



Laser Tag

HALLOWEEN

gotta love it...Abuela made some fantastic costumes to cater to Dean's obsession with the movie Elf.  He quotes the movie constantly and just loves his new look!!  Dean is joined as Elf by Dad, Mom and Evie sporting the Jovie costumes.  Owen continues to save the world as Batman and Cal was doubling as a candy corn and a homemade Christmas gift (thanks Omma)!

                                        

Since this blog was set up to track Dean's health, we are proud, proud, proud that Dean's October well check up came back with a clear culture!  It's a stressful appointment and an even more stressful week waiting for the culture results to come back but so very happy that he is healthy, gaining weight, in the 50-75% for height and weight (anything 50+ is desirable) and acting like the typical 2 year old.  He is hilarious, such a funny kid.  We're very thankful for Dean, for his health, for his humor, his influence, his love of life and soon, so very soon, we'll kick off our 2013 fundraising season and hope, wish, pray you'll be right alongside us.  We have many opportunities to join raising money ultimately in the quest for a cure...

If you're in the area, Save the Date for our Great Strides walk on Saturday May 18th at 9:30am.  If you're willing to attend a walk for us in your area, there are hundreds of them around the nation, drop us a line and we'll get it all set up for you.  This would be a HUGE way to help us raise money for r&d for CF treatments, ones that could potentially be the cure for Dean's CF.  If you can see getting your family and friends involved in a walk near you, we'll help you figure out the basics! 

One way we like to share awareness of CF is sharing some recipes that we found that not only Dean enjoys but the other kids (and us too).  With 3 different diets in the household (regular, vegetarian and Dean’s high fat, high calorie), we submitted our "fun taco boat" recipe to the Back to School Chef4CF.com contest and defended last year’s lunchtime CF crown, scoring another kitchen scale!  Check out the recipe on the site if you need something simple, yummy and easily modifiable.  Here is a link to one of the online articles.  We’re always looking for healthy and tasty recipes so send any of your favorites our way! 

As you celebrate Thanksgiving with your families and friends, remember what means most to you this season and in life.  Take care to nurture those relationships and tell those people that you really care.  God Bless, Happy Thanksgiving and thanks for reading!

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26.2 amazing miles for Team CF

We started out early with a beautiful drive into the city where a few people joined together to run an amazing 26.2 miles on a calm, cool 42 degree October Chicago day.  Becky and I cycled around on our bikes to join the 1.7 million spectators cheering, ringing cow bells, clapping, screaming and supporting the runners.  Becky even made some signs to pick up the mood and get the runners smiling...



Take your time, the Bears don't play till 3:00



Free Hugs

 Let me tell you, I was truly amazed at the amount of hugs she got. Now to the heart of the day, the  runners.  I wanted to cry so many times for a few reasons: 

1. the amazing achievement they would end their day with
2. the mental strength these marathoners possessed.  Yes, training is a key part of a race like this but not one of those people that crossed the finish line could have done it without a strong will power
3. the number of people that selflessly raised money for so many different causes so they could share their day by helping others.
4. you'll find this reason out in a bit.....

For Jim, this was marathon number 3 and I was so proud and so very very excited the few times I got to smile, scream and see him during the race.  He trained hard for this, was mentally strong, physically fit, mighty fine to look at and possesses this internal strength from God that he can do anything and with that, he can.  I love his attitude, determination, follow through and his ever growing medal collection :)

 

Mile .5



Mile 11



a quick kiss at Mile 24

Jim made the choice to run for Team CF this year and asked some friends to join him.  With the record time the marathon registration closed in, running for a charity was one of the only ways to get in on the game this year.  Candy, Sunni and Emily jumped on the chance to make their marathon debut and didn't hesitate, nor complain, about raising money.  So alongside the training runs, the time away from their beautiful kids and awesomely supporting husbands, they jumped on the chance and raised in their own ways over $4,000 for the Cystic Fibrosis Foundation.  A...MAZ...ING!


Candy & Emily at Mile 4

Sunni at Mile 11

Sunni at Mile 24




Emily & Candy at Mile 24

So, reason #4 that I mentioned above....I wanted to cry every time I saw Sunni, Candy and Emily running by, I couldn't stop thinking because of you and your time, Dean will have more days.

I'm proud, so very proud of the awesome run you did today.  The awesome achievement and the strain you put on your body, your back, your knees, your shoulders, your hips, your poor toe Candy :( .  We know it wasn't easy and we're so glad you did it.  You all deserve that medal and so much more.  Enjoy your time, your accomplishment, the glory and may God continue to bless everything you do. 

And our parents never get the glory, right?!?!  Without my parents today, we couldn't have done this race today.  Thank you Omma & Obba for the marathon you put up with here today!  And thank you Becky for being my cheer partner!

we love you daddy!

Anyone out there want to run for our great cause in 2013, please let us know, we need runners and we promise we'll be out there to cheer you on!!!

We are proud of our 3x Ironman 70.3 Inspiration!

Team Burns set off on an end of the summer adventure this weekend to watch Jim complete the Steelhead Ironman 70.3 in Benton Harbor, Michigan.  After the busy summer we had, we missed out on prime (and affordable) rental properties in Michigan so opted for the RV route.  Jim has been talking about taking a cross-country road trip since foooor…evvvveerr and succeeded in getting the kids to jump on the band wagon a few years back so this was a perfect opportunity to test out the waters, rent the RV for the first time and rely on God’s beautiful nature for entertainment!   The kids were shocked when Dad surprised them but giddy on the 2 hour ride. 

The VACA...
We had our first experience with a KOA Campground and figured that we made the right choice in doing the RV thing when we got campground #56 (Jim’s lucky number).  Fortunately, Jim brought a small set of tools which came in handy immediately as we parked the RV and the bathroom door was inadvertently locked and shut.  Jim then hooked up our water and electric and we proceed to cook grilled cheese on the cutest little stove ever.  Friday we headed over to St. Joe’s  to check out the area, make a stop at the Discovery Kids Adventure Museum, ride the lovely carousel and the inevitable stop at WalMart we headed back, spent an hour trying to get our water hose connected (we learned that a little muriatic acid can fix the treads on the hose connection…who knew?) and then finally got to dinner and our mini campout of hot dogs, veggie burgers and s’mores.  Thank Heavens for the Canadian boy scout camping next to us that helped us with our minor fire issue that evening!  On Saturday, we met some good friends and their boys for a day at the beach - what started out as a chilly 55 degree morning, turned into a beautiful day that went way to fast, but it always does when you're hanging out with friends.  We got home and "saved" a tortoise from it's demise against a size 13 shoe right outside our RV and officially "adopted" our little guy, whom the kids (coincendatally) named Benton.


Discovery Kids Zone

Bon fire



The kids and Benton, the tortoise




Charlie, Owen, Cali, Dean, Evie & Luke



One of my favorite parts of the few days before we went away was after Jim took over planning and renting the RV, he did everything he could to make sure our race day went as smoothly as possible.  Anyone that has done a race, particularly a triathalon, knows the business and logistics that are involved with getting the packet at the expo, parking, setting up the transitions and then logistically for the spectators trying to “find” your athlete.  Since the transition area closed  super early compared to Jim’s race time, he wanted to make sure we were close enough so that the kids could sleep in the RV while he set everything up race morning.  Thanks to the Boy Scout troop 623 and their stellar parking skills and organization, they agreed to let Jim park the RV Sat. morning through Race Day Sunday.  Here’s my favorite part, in Jim’s words: “ This is going to be FANTASTIC!  We will park 5 minutes from the beach the day before so you guys can keep sleeping when I set everything up and then you’re right there on race day if you need to go back!  Only one little issue…we won’t have water or electricity that day because we’ll be in a parking lot.”  Hmmm…umm, ok…wasn’t ready for that one but luckily the RV did have a generator and water pump so we survived (except for the gray water backup…but that’s a story for another time)!

The RACE...
So, Race Day rocked.  1.2 miles in the 67 degree Lake Michigan water in 35 min and 27 seconds.  56 beautifully fast miles on the bike in 2 hours 59 min and 55 seconds and 13.1 hot, hilly miles through Jean Klock park.  Jim looked like one of the pro’s, never winded (or at least never showing it), always a smile and attempted hi-fives to his cheering crew through to the very end.  His goal was a 6 hour race.  His finish times (including transition time) was 5:58.03.  A third 70.3 half-ironman medal to add to the growing collection and a burning desire to sign up for the full.  Yikes? 140.6?   Will keep you posted…can our awesome spectating crew handle a full Ironman??? 



On the way to the race



Swim



Bike




Run



Finish!



#1 Fans!



Now, I’m off now to convince Jim that our camping and RV trip is over and he can change out of the grey sweats and the wife beater :)

Thanks for the prayers, support and well wishes...next up...the Chicago Marathon in October...stay tuned...

2012 Steelhead 70.3 Shutterfly album

2012 Chillin' & Grillin' for a Cure Recap

Thank you...it was absolutely awesome...we netted $8,472, a startling amount for something we never thought would turn into as amazing of a day as it was.  This brings our 2012 fundraising total to $36,000!

The amount of work that went into it was mind-boggling.
The amount of time that went into it is much appreciated.
The amount of energy that was exerted before, during and after could light a small village (ok, well, maybe not really but I'm running out of ways to explain just how crazy, awesome it was)!
The love that was shown to us will keep us warm at night.
The support and all this money raised for the CFF will aid in finding that cure and adding tomorrows (just to reiterate everything that we raise goes directly to the CFF via our great strides webpage).

Thank you to everyone that helped us prepare for one of the most exciting days!  We appreciate everything from the months and months of work leading up to it, to the day of and the kindness and generosity of everyone throughout this.  The prep work and admin work to pull it all together, solicitation of goods for our raffle baskets and the fun we had pulling them all together, the food and the aggressiveness in which you tried to get things donated, the desserts, the dessert donations, the flyers, the kids band, the DJ, help with the logistics of the rib sales, the printing, the set-up, take-down, ice runs, watching the kids, shopping and cooking, cleaning, ideas, picture-taking, "bartending," serving, grilling, making popcorn, preparing and executing kids games, organzing the bag tournaments, your connections, thank you cards, counting and organzing the dough, asking your friends for help with donations of goods and $, the awareness and the time you spent with us that day.  We appreciate everything, everything, everything.  We know there are so many little things that made this run seamlessly that we didn't mention but we know we couldn't have done it without each and every one of you.

We're fighting a winning battle here, or at least we feel that way now that we have 2 years and $59,000 raised for the foundation.  It's not just the money that we're proud of though, it's the education, the awareness, the amount of people who now know what CF is, what Dean struggles with each day and how they can help make his life and so many more lives better. 

You can probably tell though why we're doing all this, why we try and plan and do what we can for him, for his big brother and for his big sisters.   It's impossible to sit back now that we have the power to make a difference not only now but in the future. 




Owen, Cali, Evie, Dean-o


There is this feeling that we have inside; the one that is just begging for people to realize that it only takes a minute to tell their friends and family about Dean and what he's fighting and how by just spreading the word, it can make all the difference in our lives.  You may not know why it's so important that we give our money to the CF Foundation, to a non-profit organization that has an operating model that has been recognized by many of the respected business publications.  Or maybe you do know. You may not know about cells, transmembrane conductance regulators, drugs that thin mucus or what a pancreas even does.  Or you may (especially if you were one of the lucky ones that got to hear us explain it a few times over the past year)!  You may or may not know that we take Dean to appointments every 3 months to culture his lungs and see a team of awesome people all dedicated to making sure every aspect of Dean's CF is being monitored.

We waited a bit to send this out as we had one of these clinic appointments for Dean at his CF Care Center where he had lab work done on his blood and his quarterly throat culture.  We're on edge for a week as the culture results come back because a positive test for a certain bacteria causes 40 additional minutes of treatments a day for 56 days.  Although inconvenient to fit in the day and extremely trying to make a 2 year old sit for 2 additional 20 minute periods, the greatest fear is the damage this bacteria causes over time to Dean's lungs.  Fortunately, Dean's culture was clear and no bad bacteria was present so we're happy to share that Dean continues to thrive and treatments remain status quo!

So, finally, thank you once more for following us and keeping us in your thoughts and prayers.  God is good and doing great things for us and within the CF Community.  Check out the picture and video slideshow of Chillin' & Grillin' for a Cure 2012 and here is a quick way to help today...

To help the CFF win a $25,000 award in the Chicago Community Champions contest (an online contest to help not-for-profit orgs raise visibility and win $ launched by Blackman Kallick Plante Moran) cast your vote for round one online at http://www.plantemoran.com/bkmerger/Pages/chicago-community-champions-rules.aspx.  You can vote as many times as you want through Aug 3rd.

Love,
Jim & Erin

P.S. - We won't email again until our next fundraising campaign so by signing up via this link you can keep up to date with Dean throughout the remainder of the year by subscribing to this blog either via a feed or email.

Final Reminder - Chillin' & Grillin' for a Cure Sat. 7/14 at 3pm

Dean-o at 2

The excitement here is rising!!!  We are ecstatic to welcome you to Chillin' & Grillin' for a Cure and wanted to send around one final reminder for the Block Party that we're hosting on Saturday July 14th from 3-10pm at 21831 yellow finch lane in Frankfort (60423).

Don't think of your typical block party, think BIG!  We have 8 FANTASTIC chefs geared up and ready to serve their ribs to the 50 lucky people that purchase a rib ticket.  You'll get to sample one rib from each chef and vote on your choice for the best ribs.  The lucky chef will win the prized Chillin' & Grillin' trophy!!  If ribs aren't your style, don't worry, we have good old burgers, veggie burgers and hot dogs ready for grillin' and some fantastic sides to complement. 

Aside from the food, we have over 50 spectacular baskets and items ready to raffle.  We mentioned some of them in our last email and the donations keep on coming - we guarantee there will be something for everyone.  And if you can't make it but want to get in on the raffles, send us an email or give us a call, we'll send you the list of items and put your tickets in for you!

Don't forget to bring your little ones!  The street will be closed off and there is a secure cul-de-sac where they can ride scooters or bikes in if you want to bring them along.  We'll have a jumpy (weather permitting), music by Poochamungas (a kids band) and caricatures, face painting, balloon artist by Art4Clowns, mini taekwondo sessions by ATA Frankfort and many other kids games to keep the little ones smiling.

Besides the basket raffles, we'll continue with raffles throughout the evenings (wine pull, 50/50, kids quick raffles, etc.) and we'll start the bean bag tourney as the DJs are starting and challenge your skills with some of the best we know on the S. Side!  The beer tent for those of age will be open as long as our supply lasts.  The general timeline is below and as mentioned, we're closing off the street so please plan on parking on Nebraska, Morning Dove or Blue Bird.

Thank you for all of the AMAZING help and support we've had so far and we're looking forward to celebrating with you and raising some dough to find Dean's cure.

With love and gratitude,
Jim & Erin
http://www.eatpraydean.com/

3:00 - Let the party begin!  Food and raffle ticket sales
3:30 - 4:00 Music for the kids by Poochamungas
4:00 - 6:00 Ribs and food served
4:00 - 6:00 - Caricature, Face Painting and Balloon Artist for the kids by Art4Clowns
6:00 - 6:30 - Music for the kids by Poochamungas
6:30 - Dessert station
7:00-10:00 - DJ
7:00 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle
Kids activities and games throughout the day.

Yes! Yes! Yes! Phase 3 of VX-809 & Kalydeco

Yes!  Such exciting and positive news announced last week about the clinical trials that are going on for Dean's mutation.

Here is the link to the article and I'll summarize the excitement:

A little science to explain what is going on...Cystic fibrosis is caused by the mutation to the CFTR gene which hinders the transfer of water and salt across cells affecting both the digestive and respiratory systems.  To manage the digestive system properly, Dean takes pancreatic enzymes before snacks, meals and milk since his pancreas doesn't produce the enzymens needed to digest fat.  On the respiratory side, oatmeal-like mucus is produced in the mucus producing organs and since last August, we've been giving Dean daily respiratory treatments to prevent a buildup of mucus in his lungs as well as thin any mucus that is making a home in his lungs.  We do this to help him breathe easier and because bacteria like to breed in warm, sticky environments and we're trying to prevent the bacteria from causing any damage to his lungs.  So, back in January, the FDA granted approval for Kalydeco, which is the first drug for CF that doesn't treat the symptoms but rather treats the disease by targeting the CFTR gene by helping to open the cell "gates" to allow better transport of ions across cell membranes.  Dean's issue though is two fold.  Not only do the cell gates not open but the protein can't even get close enough to the cell surface to get out!  So, the Cystic Fibrosis Foundation partnered with Vertex and developed a drug (now called VX-809) that they intend use to get the CFTR protein to the cell surface, where Kalydeco can then work it's magic, open the gate and allow for the correct flow of ions.  On Thursday, final results from the phase 2 clinical trial of the combination of these drugs were released which showed significant improved in lung function for patients that had the same mutation that Dean has.  Lung function is measured by how much air can be expelled from the lungs in 1 second.  Although Dean is too young to get measured for this now, these trials in CFers 18+ with the same set of mutations showed very promising results.  So, the next step is the pivotal phase 3 trial which will be the mose rigorous evaluation of the safety and efficacy of the combination of these 2 drugs in patients who have the double deltaF508 (in preparation for another FDA filing).

We are beyond hopeful and prayerful that God guides these scientists to continue making the future look bright for our son and so many others with this disease.  We are so thankful for all of your support and wanted to explain what $75million of research dollars can do for one little man and 30,000 other people in the United States alone.  It's the passion of the people that care so much to do everything to help us raise money that is allowing this to happen.  As a "orphan" disease, meaning one given very limited federal funding, the Cystic Fibrosis Foundation is at the mercy of private donations and the families and friends of those affected to raise money.  We truly won't stop until CF stands for Cure Found.  Thank you for helping us.  Our next fundraiser for Team Eat. Pray. Dean, Chillin' & Grillin' for a Cure is on July 14th from 3-10pm.  Please say you'll come and be a part of this amazingly huge part of our lives.  We thank God for you and for your kindness and your prayers.

With love and appreciation,
Jim & Erin

check out http://www.eatpraydean.com/ for the schedule of events on July 14th
email us at findacure@eatpraydean.com if you will join us and need a link to the evite
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Dean 2 years old

the awesome kids that will do anything to help Dean-o

"God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.” ~Hebrews 6:10 (NIV)

Check out the lineup - don't miss Chillin' & Grillin'

Hi Friends,

We wanted to send out a reminder about our “Chillin’ & Grillin’ for a Cure” block party fundraiser to raise money for the Cystic Fibrosis Foundation.  As you know, we are striving to raise as much money as we can in the hopes of advancing research to find a cure for our little man.  Over 90 cents of every dollar donated goes directly to fund vital research and development.  If you didn’t get a chance, log onto our website (www.eatpraydean.com) to find out more about Dean and to watch him in his very own video.

Put in on the calendar and invite your friends and family to the Block Party at our place on Saturday July 14^th from 3-10 pm where we will have a rib cook-off, basket raffles, games and activities for adults and kids!  Below is a timeline of the events that we have secured so far.

Thank you,

Jim & Erin

21831 Yellow Finch Lane

773-580-3929

July 14th Chillin' & Grillin' Schedule of Events

9:00 - Fire up the smoker and start cooking your ribs!
3:00 - Let the party begin!  Food and raffle ticket sales
3:30 - 4:00 - Music for the kids by Poochamungas

4:00 - 6:00 - Ribs and food sales

4:00 - 6:00 - Caricature, Face Painting and Balloon Artist for the kids by Art4Clowns

6:00 - 6:30 - Music for the kids by Poochamungas

6:30 - Dessert station
7:00 - Bean Bag Tourney
7:30 - Final call for raffles
8:00 - Basket Raffles, 50/50 (winner need not be present), Paddle pull raffle

Kids games and activities will take place throughout the day

Time TBD:  ATA Frankfort will host some mini Tae Kwon Do sessions for kids and adults

There is still time to show off your grillin’ skills – we have 6 competitors.  Let us know by June 30^th if you’d like to join the Rib Cook-Off.  The rib cook-off portion of this event is sponsored by our friends from the Glen Ellyn Backyard BBQ Competition. Although a non-sanctioned event, this is for all teams, regardless of skill or competition experience, to compete, raise money for a great cause and either gain experience or try out new recipes and techniques.  Contestants must provide all their own equipment and bring 5 slabs of Pork Ribs (spares or baby backs) and ingredients. Charcoal and gas grills/smokers are welcome. A “boat” will be provided for each dish. Teams may arrive as early as 9:00 AM and begin cooking and setting up if you will cook your ribs here.  Rib Tasting will begin at 4 P.M. and will conclude at 6 P.M. or whenever you are out of ribs.  We will only sell 50 tickets to taste the ribs — with each tasting equal to 1 individually cut rib from each contestant. Each ticket sold will also include a vote for the best rib.

http://www.lovelylifephotogallery.com/

http://www.cff.org/

http://www.eatpraydean.com/

The winner of the Cubs/Sox raffle is...

We had an awesome weekend running the warrior dash, dancing away to a family wedding and celebrating the most important men in our lives on a special Father's Day.  We ended the weekend with Dean pulling the winner for the tickets to the Sox / Cubs game that we sold to raise money for the CFF.  We thank Karen for donating those tickets and for all of the people that supported us and purchased tickets!   Check out the video below to see who won...

Here are a few more pictures from the rest of our weekend...



Warrior Dash 2012



Congratulations on your wedding Tony & Shannon!

And a salute to the best Dad's in the world!


The world's largest Peanut in GA!



Pelican Beach in Florida 2012

Obba

Grandpa

Save the Date for the Chillin' & Grillin' for a cure Fundraiser Block Party on July 14, 2012 3-10pm.  Check out http://www.eatpraydean.com/ for details.