a different kind of perfect

i'm a mom...on a mission...to enjoy life everyday...appreciate the little moments...try not to get so easily annoyed...raise my kids with a faith legacy that leads them to continue to be amazing people...and to make my husband feel as special as he makes me feel.

What is Cystic Fibrosis?

CF is an inherited chronic disease that affects the lungs and digestive system of about 30k children and adults in the US (70k worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that both clogs the lungs and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. [www.cff.org]

Saturday, March 30, 2013

Happy 3rd Birthday Dean!

Dear Dean,

Happy 3rd 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


Monday, March 11, 2013

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
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

Saturday, March 2, 2013

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 1st 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!

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