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]

Tuesday, April 15, 2014

A CF CLINIC APPOINTMENT & FUNDRAISING UPDATE


Sending out our 2014 fundraising kickoff/email blast last month invigorated us to keep pushing for that cure. Dean doesn't stop his treatments ever so why should we? We had a very busy clinic appointment today and are thankful for the team of people that collaborate to keep Dean healthy. Today, we met with Dean's CF Specialist/Pulmonologist, his CF nurse, dietician, respiratory therapist and social worker. We didn't have to meet with the psychologist or physical therapist this round (although they're awesome, it makes for a longer visit)! From the last visit, Dean has gained weight (he's a whopping 17.2kg/37.9lbs) and height is consistently in the 50-75% for height, weight and bmi. We haven't entered the age for Pulmonary Function Tests yet so a good listen to the lungs and a ton of questions about him, his eating habits and some other unmentionables, a throat culture to see if he's culturing any bacteria in his lungs and we're (almost) good to go. I'm making it sound so easy and today was all positive but the emotional stress for us can sometimes be unnerving. After we left the appt, we headed to the lab where they took 30 ml of blood to run about 5 different panels on him to test different vitamin levels and everything else under the sun! We now wait the excruciating 5 days to see if he cultured anything (which would require add'l daily medications). Say a prayer we're all clear.

We'd like to say a quick but very very sincere thank you to everyone that has donated so far to our events, to those that have held and are leading fundraisers of their own to help us, to those that are leading a Great Strides walk team near their house, for those that are training for a bike, run, climb, for those that have already ran for Dean, for those that support our events, for those that ask how Dean is doing and genuinely want to know about him and his health, for those that follow us on facebook, share our events, help us with everyday life and for those that pray for Dean, for us and for this cure.  We didn’t list everyone, but we are forever ever grateful for all that you do.  Follow us on facebook, where we post all the pictures and stories and thank you’s as they happen.

We know the cure is coming; we're looking forward to the day we can celebrate, hopefully soon, but we will be celebrating. In the meantime, please continue to keep us a part of your life, donate if you can and join the events we're participating in (listed below).

UPCOMING EVENTS

More are constantly added, the complete list can be found at www.eatpraydean.com but we can make any event a fundraiser for the CFF (email us for more info).

Great Strides Walk on May 17th in Centennial Park, Orland Park Illinois (Registration at 9:30 am, walk at 11). What is Great Strides? It is an easy opportunity for you to help us raise awareness and funds for CF. You sign up via the link below and a fundraising page is created for you - all you have to do is send it out to your friends and family simply saying why you're helping us. You can do this for this walk (or if you're up for a challenge, join our team at one of the events listed below). If you want to help but don't feel like an event this year, you can definitely donate to our walk page.   A GREAT big thank you to everyone that has signed up already to help fundraise! 
May 4: Team EPD at the Palos Half Marathon (thanks to Tim & Michelle for leading and to Dave, Maura & Caroline!)
June 1: Team CF 5k Fun Run, Barrington, IL (join Cali, she's leading this team.)

July 11: SSPCSC Golf Outing at Silver Lakes save the date, the South Side Plumbing Contractors Social Club has chosen us as their charity this year, we are thankful to have met these awesome group of men who totally have the fundraising thing down to a science.  They’re committed, compassionate and fun! They are having a golf outing with proceeds to benefit Eat. Pray. Dean and CFF. 
August 16: Team CF at the CF Cycle for Life (this will be F U N, we have a great team already for this 30 or 65 mile ride – thank you Kevin, Heidi, Bob, Beth, Tommy, Karen, Tom, Kathy, Pam, Becky & Scott)

October 12: Chicago Marathon (thank you Ryan for running your second race of the year for us)
November 9: CF Climb for Life (thanks Candy & Greg for leading this and Becky, Scott and Cali for joining)

Nov 9: Edwards 1/2 & Full Marathon, Naperville (thanks Sunni & Tarah for running this one for Dean!)
https://www.facebook.com/EatPrayDean

Donate:  http://fightcf.cff.org/site/TR/GreatStrides/45_Greater_Illinois_Chicago?team_id=14277&pg=team&fr_id=2114
April 15, 2014

After Dean's quarterly CF clinic visit