Happy 5th Birthday Evie Dorothy!

A little break from the CF updates to share that Evie Dorothy Burns turned 5 yesterday!  Time flies...she is an awesome little girl.   Jim took the day off of work to take her to breakfast but she said, I don't want to go!  He said ok.  After a great day helping in her classroom at school and a short playdate, Jim asked her to go to lunch, she said, I don't want to go!  He said, well what do you want to do?  This was her answer:

Evie doing pull ups

Our little overachiever watches and mimics dad in all his athletic endeavors.  Love it!

We cooked her favorite dinner (Auntie Mayra's marinated Flank Steak and corn on the cob) which doesn't jive with the plant-based nutrition but we obliged for our little Sweet Cheese.  When asked earlier, Evie said she didn't want cake, cupcakes or a cookie, just ice cream from the creamery but we had to take our bikes there to get it.  She wouldn't accept riding in the car.  We had a great ride, the storms held off and the kids got a treat we don't usually indulge in:


Evie - 5

Cali - 9

Owen - 7

Dean - 3

 Evie, we pray you all treasure your free spirit and forever keep your sense of independence and adventure.  We love you with all our hearts!

2013 Great Strides - another AMAZING day!

Last Saturday was an awesome day!  We gathered early in the morning with the sun shining, the fear of rain erased by the beautiful blue sky and an abundance of amazing family and friends for our third Orland Park Great Strides Walk.  After setting up the tents, tables, chairs,  t-shirts, and hanging the banner, we were blessed with an abundance of food from dear friends to satisfy every craving all of our 150 team members had.  We were able to chat, walk and share while Dean (and Evie, Owen and Cali) ran around playing, smiling and turning his head at the camera.  Associates from both the Frankfort and Tinley Park Kohl's participated and shared their morning volunteering with us, only one having a connection to Dean.  I want to list out every name of all the people that helped us last Saturday but I'd be listing everyone. We wanted to talk to everyone on Saturday but there were those that we only got to hug and say hi and goodbye too.  We appreciate the time and energy it took to join us.  We are so blessed and amazed by the support we receive, both financially and spiritually and absolutely know we could not do this without any of you.  The majority of the $23k so far has come from your generous donations and the people that have signed up to help us raise money by sending our story to their family and friends.  We are excited to have another two (maybe three) more walks this year:  Aunt Karen will be walking in Reno in a few weeks and Aunt Dor in October in Palm Springs.  We are forever grateful for their time and excitement for our cause.  Here is a team picture from last Saturday and a wonderful picture of just how tired Dean was by the time the walk was ending.



Eat. Pray. Dean Orland Park Great Strides 2013

Sleepy Dean on dad's head

Besides the two walks, we are doing everything possible to generate money to ensure that by the time Dean is eligible, he'll be able to have medicine to treat the underlying cause of his Cystic Fibrosis.  If we didn't already mention, nearly 90 cents of every dollar goes directly to fund vital research and development.  Money is what pushes the needle to get us closer to the cure.  Prayers are what help keep us faithful that our cure is within reach.  Yesterday evening, Cali asked me how long a person with CF lives. I almost cried at that question, hoping that I would never have to verbalize to one of the kids.  Armed with the knowledge that the truth can never fail, I told her. 37 is the median life expectancy. I will turn 37 this year and as Kimmy said, I couldn't imagine my life being near the end.  I explained to Cali that that is exactly why we fight so hard to raise money, why we get up and do all 3 meds and a vest treatment first thing before breakfast EVERY SINGLE MORNING and a vest again before bed, EVERY NIGHT.  That is why we take him to clinic appointments every 3 months, why we make sure he gets a ton of exercise, why we keep up with his vitamins and enzymes, why we changed our diets so that they ALL understand how important nutrition is to their well-being. That is why we walk in Great Strides, why we spend a crazy amount of time ensuring that the Chillin' & Grillin' event is fun so people want to support us and keep coming back.  That is why we run, bike, climb, swim - to not only raise money with Team CF but to teach all the kids that besides nutrition, exercise is vital to keeping your body healthy. Finally, that is why we pray and have faith that we can accept and know that God put us here for a purpose and we're all in this together.  This family works with all of us in it and that's exactly how we intend to keep it.  I hope that calmed her fears a bit, but I know it made her realize how important of a role she plays in helping raise awareness and in loving and fighting for her brother.

We are preparing for the Saturday June 8th Chillin' & Grillin' for a Cure on Yellow Finch Lane in Frankfort, Il. from 3-9pm. Check out the schedule of events and purchase tickets at www.eatpraydean.com.  We welcome you to join us and support this very worthy cause for either the satisfaction of knowing you're helping Dean, the 30,000 others in the U.S. or just to have a FUN family day. 

Connect with us on Facebook at www.facebook.com/eatpraydean where we'll soon post the raffle items that we have and on Twitter @EatPrayDean and Instagram CURE_CF_EATPRAYDEAN

Thank you for all that you do to help us add tomorrows.

Info on Dean's Great Strides Walk and Chillin' & Grillin' for a Cure

Our Great Strides walk is on Saturday May 18th at Centennial Park in Orland Park, Il.  Centennial Park is large and the best place to park is in the Metra station (10401 153rd Street) and walk across to the fields.  Registration and light snacks at 9:30 with a kick-off speech at 11, followed by the 2.5mile stroll around the park and a boxed lunch around noon.  Bring your bag chairs, strollers, wagons, scooters, camera and an umbrella or sun screen.  Thank you to the amazing group of people that have already registered and helped us fundraise by reaching their family and friends - we're at 50% of our 2013 goal of $30k!  Pre-register/donate for the walk here: 

http://www.cff.org/Great_Strides/JimandErinBurns.

 

We're bringing back the Chillin' & Grillin' for a Cure this year on Saturday June 8th from 3-9pm on Yellow Finch Lane in Frankfort, Illinois.  You can see the lineup of events and prepurchase tickets at http://www.cff.org/great_strides/CandG.  Tickets are discounted through May 31 and include your food, drinks, music by Poochamungas and Cannonball, bounce house (supplied by Hawkinson Kia, Hawkinson Nissan), adult bag tournament and kids crafts, games and activities (Art4Clowns will be here again with the Caricatures, face painting and balloon artist and Frankfort Black Belt Academy will host mini Tae Kwon Do sessions).  We will have a separate rib competition and a ton of raffles (including 4 one-day park hopper passes to Disney, a basket by Beam, Inc., 31, movie passes, Museum of Science & Industry, Shedd Aquarium tickets, rounds of golf, minor league hockey and baseball tickets, housewares, kids summer fun basket, wine and so much more).  Like us on Facebook to get more frequent updates:  www.facebook.com/eatpraydean.

 

Our little man turned 3 on March 30th and is full of excitement and "gweat" ideas. Healthwise, he's doing well digestively but recently had to increase his daily respiratory therapy routine after his annual X-ray showed additional inflammation and mucus build-up in the lungs. In true Dean form, he's taking the extra daily meds like a trooper. 3 inhaled and nebulized meds and a vest session in the morning before his day starts and a vest session in the evening before we wrap up our day is his norm. Phase 3 Clinical trials start in a few weeks for the combo of drugs that we pray will be his cure. It's so close, it's hard to contain the excitement and feeling of hope. Thank you for being a part of this, for your support and your prayers for his health and his cure. 

 

With love and thanks,

Jim & Erin
www.eatpraydean.com 

Another year we're Shufflin'

I didn't plan on a post today but really had a moment during the 2013 Shamrock Shuffle so thought I'd share.

My training wasn't what it should have been, I do admit that one.  Jim will testify to that, but I signed up because we like to do this race together when we can and a good friend motivated me to sign up days before it closed (thanks Kelly...this post title is for you :) ).

Anyway, I wasn't in the best of moods preparing to run this 8K myself.  Jim, in his fitness excellence, managed to run his way to a Corral B start (I was 20 minutes behind) so I was giving him a hard time for running a race "with him" when we were only with each other until gear check.

The weather was beautiful for a run and after waiting 45 minutes for the start, I actually generated enough excitement to pump myself up for my solo journey.  Decked out in my Team CF shirt, I was pumped and ready to start.  Crossing the start line was nice but my limited training showed within the first half-mile and the cold wind and air made it really difficult to catch my breath.  I was struggling and not happy.  As I crossed past mile marker 1, I immediately thought of the irony of me struggling to catch my breath as I run in a race where I helped raise money for all those suffering to breathe.  I almost lost it.  I made all those crazy faces one makes to keep the tears from falling and I knew our adorable nieces were waiting at mile 2 so had that to keep me strong and focused.  I saw Nikki, Charlie and Kimmy and immediately felt better, knowing how many people are out there supporting you in so many different ways helped. I got a few quick hi-fives before turning to continue and shortly was able to regulate my breathing.

Nikki & Charlie

 I was relieved to be running steady, breathing steady and starting to enjoy the race.  I was about halfway through but mentally found it hard to get over the fact that some people just don't get to get that big gulp of fresh air or feel the satisfaction of a deep breath.  Dean is fortunate enough now to have full lung function but I was scared for the inevitable, sad for the CFers that deal with it already and praying for Holly who recently lost her battle.  Don't get me wrong, it was a beautiful day out there and the crowds cheering and people are great but when you pray to God to help get you through something, you have to be prepared that it's not going to be easy.  Just at that moment, another fellow Team CF runner runs past me, says hi and tells me to keep up the good work.  Right place, right moment, I really needed that.  So I kept on running, vowing that I'm not going to stop (the race, nor the fight for the cure).  The crowds during the last mile were motivating, the music was pumping, the finish line ahead, end in site and later finding out that not only did I run my personal best but Jim smashed his personal record. I'm predicting an elite runner title in his future.  Good job babe!

After the race, we met up with Kim and Brian after his awesome run, some other great fellow runners, met some new friends and old friends from years ago and the most adorable 2 year old we've only seen in pictures!

Oh, and the coolest thing of all...on the way to pick up the packet a few days back, Jim's explaining to the kids where the race will start, end, where the lake is and Dean says, "Daddy, when I grow big, I'm going to run a race too."  I'm determined to run a race with Dean one day and dedicated to make sure he has the breath to do it with.  Please save the date for our Chillin' & Grillin' for a cure on Saturday June 8th, 2013 at our place and if you're unable to make it, please consider a tax deductible donation:
http://www.cff.org/Great_Strides/JimandErinBurns

With love, 
Ere

BY, Jim, Erin

Bananas and Beer Post Race

My running buddies next year:  Scott & Sue

 

Happy 3rd Birthday Dean!

Dear Dean,

Happy 3^rd Birthday little man. You are a crazy awesome 3 year old now. Even since you could talk, you have made us laugh because you are so sarcastic. It’s amazing how much like your dad you are. J There are so many things you have grown to love:

·         garbage trucks, taking out the trash and your flourescent garbage man vest

·         your favorite lunch of peanuts, salami, cheese and apples

·         strawberry italian ice and slushies

·         giving gifts to people

·         dora, bob the builder and pablo – treatment time just flies by with these friends

·         building houses and knocking them down like the big bad wolf with Obba

·         the sunshine on your face, taking walks, getting the mail

·         singing your Hosanna song (over and over, louder and louder)

 

There are so many things you know how to do:

·         make us laugh; you have such a powerful, shoulder shaking laugh

·         make us smile when you run to the door to give Cali a big hug when she walks in from school

·         giggle like there is no tomorrow when Dad tickles you

·         roll around and hold your own when Owen wrestles you

·         making “smoodies” with Evie

·         telling knock-knock jokes that don’t make sense but we laugh because your laugh is infectious

·         make your aunts laugh by calling them "uncle"

·         cooking and shopping with mom (and our quick trips to the museum)

 

There are so many things you shouldn’t know about/have to endure at this young of an age:

·         why you have to so frequently wash your hands and use “hanitizer” to get rid of germies, they’re everywhere, right buddy?

·         why having too many fruit snack and too much sugar hurts your belly

·         why you need to wear a mask when you walk into your doctors appointments

·         blood drawn, annual x-ray’s, quarterly throat cultures, quarterly clinic appointments

·         why your BMI is measured at age 2

·         why all the people in your clinic visits are covered head to toe and you can only see their eyes and hair

·         breathing and respiratory clearance treatments first thing in the morning and last thing and night

We pray that you will always have the desire to help and give to others. We pray that you continue to enjoy each and every day and relish the simple things in life, like playing, making others smile by letting them know they they’re your “friendy” or that you “wuv” them. Snuggling up with your Omma, Obba, Grandma, Gigi or Grandpa and making them know that your love comes right from the heart. We pray that you will always be as strong as you have been these past 3 years and that you’ll always be an example of just how great of a blessing God sends to Earth. We promise you that we’ll fight every day for you. We’ll enjoy the time we have with you, your brother and your sisters but we will not stop fighting until a cure for CF is found. We promise. We love you little buddy, you are our deano sheano cappuchino.

Love, Dad & Mom

To help us smash CF for Dean:  http://www.cff.org/Great_Strides/JimandErinBurns

 

2013 Eat.Pray.Dean Fundraising - a year of HOPE

Hello everyone!

Happy (almost) 3rd birthday to our little Dean-o! Dean still loves garbage trucks and building towers, wrestling his brother, watching for the UPS and FedEx guys, playing tag with his sisters, sword fighting, pretending everything is a walkie talkie, baking with Mom and dancing to loud music with Dad. He's awesome. Dean also asks before he eats if a food has fat in it so he can take his digestive enzymes. Dean is a champion and takes daily doses of ranitidine, extra A, D, E & K vitamins and antibiotics when needed. Dean knows how to turn on a compressor to start his nebulized treatments right after he wakes up. He also knows how to put the tubes from his respiratory therapy vest into the compressor and knows which buttons to press to get his twice daily treatments started. He's starting to potty train, he loves to make smoothies and thinks everything he comes up with is a "gweat idea!" He looks fantastic, talks non-stop and tells us how very much he wuvs us. For all these reasons, we can't sit back knowing we can make a difference for him in ways other than what we do daily.

Why we are so hopeful

We're fired up, we're ecstatic, we're on our knees in prayer.  This May, phase 3 clinical trials will start for the drug that in combination with Kalydeco (on the market since Jan 2012) we hope will be Dean's cure. The belief that this could be it is too exciting to contain. The small percentage of people that can use Kalydeco are experiencing a virtual cure. The results are pretty amazing and we pray to God that this works. Another CF mommy called this a game-changer and it's true, this has the potential to change the CF world that we live in but we need to keep this going!

What we need from you

We've had two successful years raising money for the CF Foundation through the Great Strides Fundraising event (Illinois with all of you, Nevada with Kalena and Maryland with Marie) and the many fundraisers that were held on our behalf. We are very thankful and so very fortunate to have the help, love and prayers that we do for all of the events! We could not have raised money or awareness in that capacity on our own and we would like to continue raising as much as possible to make sure that the research dollars are there so that Dean's and the 70,000 others with CF worldwide are all cured. So, we have been told countless times that people really do want to help, all we need to do is ask. So we're asking.

• Please consider bringing Eat. Pray. Dean to one of the many walks that are already set up across the nation (it's not hard and we and the CFF will help you find the walk and set up your page - then it's just sending out your email). If we can continue to expand, we could inform so many more people and raise a TON more money! This would make a huge difference to us, our team and ultimately Dean.
• If your own walk isn't possible, we would love for you to set up a page and share our story with your family and friends and join us for Great Strides on May 18th in Orland Park. We know there are so many causes out there, but every penny counts. When people start to branch out, imagine what will happen! Imagine how much more money we'll raise together, and more important, imagine how much closer we'll get to making a better life for the people we love with CF.
• Donate to our page and help us work toward our goal: http://www.cff.org/Great_Strides/JimandErinBurns
• Keep in mind all the Team CF events that are out there and spread the word (Shamrock Shuffle, Chicago Marathon, Barrington 5K, CF Cycle for Life, CF Climb for Life).

Dean's video

Check out Dean's new 2013 video:  http://youtu.be/1OBjbOcR-Pk

Save the Dates

Saturday May 18 at 9:30 am: Great Strides at Centennial Park
Saturday June 8 from 3-10 pm in Frankfort: Chillin' & Grillin' for a Cure (this is our BIG FAMILY event that you do not want to miss)

Other events we're participating in

April 7:  Team CF at the Shamrock Shuffle

June 2: Team CF at the Barrington 5k run

June 22: San Rafael Reno, NV Great Strides
September 7: Team CF at the CF Cycle for Life (25 or 65 mile bike)
October 26: Palm Springs, CA Great Strides

Keep in Touch

www.eatpraydean.com

Click here for blog updates delivered direct to your email

New!  Facebook: www.facebook.com/EatPrayDean

New!  Instagram: cure_cf_eatpraydean

With love and many thanks for your support,

Jim, Erin, Cali, Owen, Evie & Dean

sign up to help fundraise and donate through this link

Yay! A brand new Apple(sauce)

The past few years has been full of crazy research trying to figure out Cystic Fibrosis and stressing out over his nutrition and the fact that we need to cram him full of high-fat, high-calorie foods to optimize growth and get him stronger because he will burn more calories with his labored breathing during an illness or lung infection.  Dean needs to take manufactured enzymes so his body can absorb fat, protein and fat-soluble vitamins.  Then we worry about the stress this is causing to his pancreatic tissue and we know, we know, we know his cure is but a few years away so when this happens, we don’t want to run the risk of dealing with heart disease or other issues. 

We also stress about our other three kids and their reliance on sugar to satisfy their cravings.  We want them all to understand that God gave us what we need so let’s try to go back to the basics, retrain our palate and see if it makes us feel any different.  So, all this reading, researching, talking, etc. continued to lead us back to a plant-based diet.   Honestly it just didn’t seem feasible, didn’t seam doable, didn’t seem economical (I can come up with a boat load more of excuses) but we did come across one documentary that showd actually HOW to make this healthy eating work (The Engine 2 Kitchen Rescue available on Netflix or Amazon Prime).  So we took the 28 day challenge, started February 1^st and decided to see how we feel.  We kept cooking “normal” for the kids as we wanted to see how this would affect our bodies, how we’d feel, could we tell a difference?  How did we feel?  Could this be sustainable?  Jim, being a vegetarian for 4.5 years was psyched I was willing to try as he knew there would be more food for him to eat, rather than the countless veggie stir fries or pasta and veggies (or butter) that I cooked.  However, I personally anticpated clawing my way out of February and prepared myself for a month of pure torture.

I was unbelievably mistaken.  Fascinated by the challenge and floored by the results.

In summary,

• The majority of our recipes came from the Engine 2 Diet book.  I found some others online (there are some great vegan sites out there).
• With our new Vitamix - the best appliance on earth, well worth waiting longer for my Apple (not necessary but super helpful)!  The variety of things we were able to create using this blender helps to make the process a little more fun:
• Smoothies - used to get extra veggies and fiber-filled fruit into all 6 of us; used as a great way to satisfy a sweet tooth and a great way to get the kids involved while slaving away in the kitchen.  
• Soups - yep, 6 minutes to a warm, yummy, blended soup.
• Sauces, nut creams and salsas to top our food and dress our salads.
• Nut butters to spread on the kids sandwiches and to mix on homemade granola.
• Homemade ice cream, applesauce, hummus, the list is endless!
• A simple rice cooker is another helpful appliance (we got ours years ago at Target for $15).
• We started a weekly delivery of organic produce from Timber Creek Farms (we did this because I was stuck in a rut when it came to buying veggies, always buying the same and I wanted to be “forced” to try something new)
• We were lazy in relying on convenient, chemical filled foods to feed our family and chose to limit the processed foods we brought into the house.
• We made what we could from scratch (sauces, vegetable broth, salsa, hummus, nut butters, etc.).
• We tried new foods:  beets (yum), chia, hemp and flax seeds, parsnips, chard, kale and leeks.
• We spent a crazy amount of time in the kitchen; it was fun to create something so healthy that tasted so good.  The tastes were A.m.a.z.i.n.g!  Truly, once you let yourself taste whole foods, you will notice when you are tasting something full of chemicals.

 

The results are truly awesome! I lost 10% of my body weight; Jim lost 6% (remember he’s already been a vegetarian for almost 5 years).  I am completely off caffeine (and did not experience the crazy withdrawal I have before when I stopped coffee).  Our energy levels have never felt greater.  The late afternoon crash we always experienced never occurred.  Digestively, everything just feels better.  I think I gained a few brain cells back and my temperament is a lot more positive (of course Jim never experienced a loss of brain cells or a bad mood so he can't comment on those). :)

 

• Getting to a point of trying this was a process for us.  We were fairly healthy to begin with, our numbers (cholesterol, bmi, weight, etc.) were all in normal range when we started.  Our main driver is to keep all our kids healthy for life.  Plus we totally love challenges. 
• Time is precious and fruits and veggies are expensive but so are medical bills associated with certain diseases that can be prevented by nutrition. 
• When your kids start asking for carrots and celery and making smoothies instead of  asking for oreo’s, you feel good and know you’re making a difference for them.
• Two aha! moments during Feb that made us know we were on track:
• During church one weekend while we were doing this challenge, we read a story about Daniel and how he challenged a guard to test his servants for ten days by feeding them only vegetables and water and at the end of the days compare their appearance with that of those that eat royal food.  At the end of the ten days, the servants looked healthier and better nourished than the others  who ate the royal food.
• During a parent meeting at the hospital, we heard a promising story of a patient in our center who has the CF mutations that the Kalydeco drug (released Jan 2012) fixes.  She is nearly, virtually cured, reducing treatments and feeling better.  We talked about nutrition then and how the mindset of CFers will have to change.  When cured, it’ll no longer be eat, eat, eat, it’ll be eat healthy, you have a long life ahead of you.  So again, for the second time we thought, ok, we’re on track.

So just wanted to share with you all.  The food was delicious, our eyes were opened to what types of processed foods we were consuming and our kids, although complaining loudly at times, are starting to make better choices and understand that their life really depends on it.

 

Will we stick with it?  In moderation, yes.  We will continue to cook like this, we will continue to serve plant-based foods at home and continue to try new fruits, vegetables, grains, flours and new recipes.  If you have any recipes you suggest us trying, please send them through!  When faced with a date night out, being away from home for various events or when we host our annual rib cook-off on June 8th, we will, as with anything in life, practice moderation.  For the kids, we will continue trying to get them to make healthier choices and pray they feel the "whole food" difference too.

Some recipes we tried and some pictures too!

Breakfast Quinoa

Black Beans and Brown Rice Extravaganza

Veggie Burgers

Raise the Roof Sweet Potato Lasagna

Sweet Potato Tacos (minus the sauce)

The dairy "cream" sauce we used in made in place of sour cream

Avocado Hummus

Grapefruit Avocado Smoothie

Vegan Baking Secrets

Parsnip and Sweet Potato Fries baked in a little grapeseed oil

To satisfy the need to snack

Veggie Stir-fry with beans and homemade sauce over rice (Jim's creation) 

Veggie Panini (Engine 2)

Potato Enchiladas (Engine 2)

Beet & Cherry Smoothie