Our Story Begins

Our little peanut, Maddox, was diagnosed with CF when he was 5 days old.

We tackle every day with renewed sense of positive energy when we see him smile and giggle at us. We are thankful that we were able to work his CF team right away to learn about it and to give him the tools he needs to grow up big and strong.

CF is Gaining Momentum

It’s amazing that in just 3.5 years ago, I really didn’t know anything about CF. I heard of it in passing, couldn’t pronounce the name and didn’t know anyone with it. Now, when something is handed to you as a challenge, you jump in all hands on deck to learn everything about it. Now that…

The Story of 65 Roses

As I was surfing on the CF Foundation page for information to share with everyone, I came across this story which I thought was really interesting. Enjoy! The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.”…

The Future of CF

The CF Foundation website has a ton of information that I would love to share on this post as there is just so much in the pipeline. Here is research update from the foundation along with updates with Maddox specifically. When a group of parents started the Cystic Fibrosis Foundation in 1955, there were no…

Understanding CF Diagnosis

Diagnosis and Genetics – Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene — one copy from each parent. Both parents must have at least one copy of the defective gene. People with only one copy of the defective CF gene are called carriers, but they do…

Cystic Fibrosis Basics

If you are an individual that likes the why and how of something, tune in. The next series of blog posts are to help everyone understand what Maddox has, how it impacts him and what the future looks like right now. Don’t worry, I have a ton of Maddox pictures to help break up the…

May is CF Awareness Month

The month of May is CF Awareness Month! Throughout the month, I will have a few posts to refresh the basics of what CF is, walk through the future of CF and understand where 65 roses came from. Don’t forget that May 18th is the Great Strides walk in Appleton where money raised will go…

A Day in Madison

Madison, the capital of WI. The city were all the individuals in state legislative positions come together to sit and discuss so many things that will effect our lives from state taxes, health care, tuition costs and so much more. And then there is me. A mom of a 3 year old CF’er ready to…

Oh the places you will go!

A week of sunshine, 80 degrees, beaches, and memories. We all survived our first week long family vacation. After Maddox’s surgery and all the stress of it, Nick and I decided that we needed to get away and get some real Vitamin D. Our vacation was booked to Florida for the first full week of…

Quarterly Check Up

It’s that time again, another doctor appointment. Just when we thought we were good/caught up with everything, Billie called and stated that we were due for our quarterly CF check up. In the beginning of the conversation, she stated that we really didn’t need the visit since we were just in the office, but I…

Recovery

Blog post 3 of 3 I think it’s safe to say that Maddox is pretty close to back to normal but not without his recovery time. When we left the hospital, he was actually doing really good but keep in mind that he was on the pain meds from surgery. As he came out of…