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.

As the Season Turns

Fall – not my favorite season. Personally, I am allergic to everything growing right now and will be in allergy hide out until the first frost. The days are quickly getting shorter and colder, my flip flops are traded in for boots, my tank tops turn in to sweatshirts and the tan that I had…

1 Trip around the Sun

365 days = 1 trip around the Sun. We can officially say that Maddox has been on Trikafta for 1 lap around the sun. What is Trikafta? TRIKAFTA┬áis a prescription medicine used for the treatment of cystic fibrosis (CF) in patients aged 6 years and older who have at least one copy of the F508del…

Most Recent CF Appointment

There was a point in my life that I absolutely hated going to the hospital and doctor’s offices. The really bright lights, everyone in scrubs, furniture that was extremely uncomfortable and the sterile smell of all the cleaning chemicals. I still don’t look forward to parking in the parking lot of the hospitals and the…

Welcome Dr Laura to the Medical Team

In May when we were at our CF appointment, Dr Pete and I had a pretty deep conversation as Maddox is very little for his age. He’s really short and skinny and never in a good place on the growth charts. The weight gain has always been an issue from Day 1 as CF’ers have…

Blank Page – Life’s Canvas of Possibility

A blank page -it’s what I am looking at right now as I am trying to sort all the events that have happened over the last few months in an effort to share everything. Nick stated I should have bullet points and see what happens from there. With how much my brain is swirling on…

Understanding the Moments

The bad news is time flies. The good news is you’re the pilot – Michael Altshuler Here we are, the first week of May in 2022. This is just crazy of how time is flying by. One of my goals for 2022 was to find myself and through this exercise so far, my passion for…

March on the Hill

March 17 – Team WI, along with 160 other advocates from around the United States attended March on the Hill for Cystic Fibrosis. The event this year was held virtually with the Senators and Congressional Representative throughout the day. During this event, we were scheduled 4 different meetings for elected officials for all of Wisconsin….

6 Months Later

We are quickly closing in a milestone within our CF Journey and I’m curious of everyone’s thoughts! Just about 6 months ago Maddox started a new chapter in his CF journey, Trikafta. This medication is the first modulator that he has been eligible since his birth and diagnosis. With the mutations he has, he was…

2022 Q1 CF Check Up

And here we are again, another 3 flips on the monthly calendar and we are walking into the hospital for our next quarterly check up. We get through the temperature testing and get the little sticker that says we are a visitor. Next stop on the walk is the registration desk where Maddox has stolen…

CF – From Mom’s View

In this post, I’m going to open up from my perspective of a mom of a child of CF. This is my from heart and my viewpoint. Every Mother/Parent is going to have their own views. I appreciate and respect them. This is not easy! We just do a really good job making it look…