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]

Monday, May 11, 2015

Dean's Great Strides Walk on Saturday May 16th

Hello all!  Dean's Great Strides walk is this Saturday, May 16th and we are excited to see you out there at Centennial Park in Orland Park at 9:30 am.  If you have your Eat. Pray. Dean t-shirt from previous years, please wear it!

Dean just asked tonight while we were putting him to bed, when is my walk?  It's neat to see him getting excited, although he cannot comprehend what exactly it all means but Jim and I are so grateful for your support and love.

If you can make the walk this year, PLEASE register by clicking on this link and choosing JOIN OUR TEAM.  If you cannot make it but would still like to donate, click here.

With love, 
Jim & Erin

Sunday, May 3, 2015

Great Strides 2015 Walk

Here we go, starting with a Dean update:  The kid is awesome, he just turned 5, loves, loves, loves to build legos and bounce on the trampoline and run around chasing Cali, Owen, Evie.  He loves to count, read his sight words and can bust a move!  On the medical side, he's growing, doing his treatments multiple times a day and recently spent hours at the hospital with labs, X-rays, clinic appt and his first time doing a Pulmonary Function Test.  He hasn't mastered the technique but scored high, which indicates his lungs are staying healthy.  

May is Cystic Fibrosis Awareness Month and we're walking again this year as we celebrate another great year and currently anxiously awaiting some news from the FDA about a drug that is targeted toward those with Dean's mutations (although for ages 12+, we are excited for what the future holds for our superhero).  

We will be at the Orland Park walk on May 16th at 9:30 am again at Centennial Park and hope you can join us!  If you will be there, please register here by clicking on JOIN OUR TEAM:  register here

Hickory Creek, one of the amazing schools in our district hosts a CFF walk each year.  Since our last update, we've been partnering with them to make their walk this year a community event.  Please look for info from the school coming soon for their May 22nd event and how to donate to the CFF through the school.

If you can't join the walk with us this year, but want to donate:  http://fightcf.cff.org/goto/eatpraydean

Thank you time!  Jim's awesome cousins and family from out west are walking for Dean next weekend and a wonderful friend from college will be walking in North Carolina the same day of our walk here.  Additionally, a great big thank you to the Delta Phi Epsilon ladies at UIC who are raising money for Eat. Pray. Dean this year; above and beyond and we're thankful for all of you!

Finally, if you haven't seen the video that Dean was a part of, please take a few minutes to see Dean in action: https://www.youtube.com/watch?v=DySt5tLi4G8

With gratitude,
Jim & Erin and Cali, Owen, Evie & Dean

Other upcoming events
Night at the Windy City Thunderbolts - July 23rd (for more info email:  vizzabe@comcast.net)
CF Cycle for Life - Aug 22 - 30 or 60 miles at Kuijper’s Farm in Maple Park, Il.
CF Climb for Life - Nov 8 - 58 flights, 1200 steps at 300 N. LaSalle in Chicago (Delta Phi Epsilon - we're looking forward to seeing you there)!

Dean, 5

Wednesday, February 4, 2015

Eat. Pray. Dean 2015

Dean is our superhero, we don’t even try to hide it.  He is now almost 5 years old.  He thinks that every penny we have should be spent on legos, he can read about 20 words, he loves to sing and dance, play Playstation, play soccer, and he cannot wait to join a basketball and football team.  Dean has joined his older brother and sisters in the valuable and true art of arguing and defending his position (on everything)!  He has a heart of gold and truly feels and cares for those he meets.  

Dean continues to take enzymes with every snack and meal (about 20 a day)!  He has racked up over 570 hours on his vest machine and this does not include the multiple nebulized treatments each morning and evening.  We travel with his treatments wherever we go, making his meds a priority in life and continue to fundraise so that one day he can breathe easily and carefree. With your help, over the past four years, team Eat. Pray. Dean has raised over $140,000 through various walks, runs, cycles and Climbs. 

We can write forever but we will let you watch the Annual Cystic Fibrosis Foundation video that Dean was blessed to be in:    

Please pray for a cure, for the scientists working so diligently on the developing science and research, for Dean and other CFers and their daily fight and for all of the events we try to share and participate in to raise awareness.  The three ways you can help:

1.  Join one of the events we are already leading and participating in: 
Orland Park Great Strides May 16 - register as a walker, make a donation, send out to your friends.
CF Cycle for Life - Aug 22 - 30 or 60 miles at Kuijper’s Farm in Maple Park, Il.
CF Climb for Life - Nov 8 - 58 flights, 1200 steps at 300 N. LaSalle in Chicago (Cali is already recruiting friends for this)!

2.  Host your own event (thank you Amy for already registering your team in North Carolina).  There are Great Strides walks, CF Cycles, CF Climbs already set up nationwide.  We will set up a team for you near your home and you can ask your family and friends to join you for an awesome morning supporting a cause that really needs you now!  

3.  Donate to fund the cure: http://fightcf.cff.org/goto/eatpraydean

Thank you for helping us fight CF - one day soon, this will stand for CURE FOUND!  Please share this letter with your address book to help us raise awareness!

With love, 
Jim & Erin

web:  www.eatpraydean.com
facebook:  www.facebook.com/eatpraydean
twitter:  @eatpraydean
Dean (4) Jan 2015

Wednesday, January 14, 2015

Dean's Quarterly CF Clinic (Jan 2015)

Dean had his quarterly CF clinic appointment yesterday. Our personal goal for Dean at this appointment was to reach 41 pounds...he weighed in at an even 42! Our little over-achiever. 7 specialists, 1 culture, muscle measurements, countless questions, 2 add'l scripts and off we go with our man of steel.