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.

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…

Keep’er Movin’

Current temperature in WI, where we live, is freezing with a chance of frostbite. Just remember it’s not so much the heat but the humidity that will get ya. So when it’s that cold out, your child has CF, what do you do to keep them healthy? Being in a bubble is not an option,…

Welcoming a New Year

Ok – show of hands, how many of us can’t believe how fast time is flying?! Seriously, the pandemic started in 2020, two years ago? Esh! Maddox will be finishing up 1st grade this spring. And all the songs I grew up with are starting to be “throw back” songs on the radio. Ouch but…

It’s Time for a New Adventure

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Maddox, Happy Birthday to you. A milestone birthday we have been waiting for since… you were born, to be honest! Not when you turn 16 and get your driver’s license, not when you turn 21 and can’t remember the night and not when you…

Don’t feel sorry for us, Help Us.

Recently I found myself telling Maddox’s CF story to a complete stranger. Don’t ask me how our story came around to talking about Maddox as he wasn’t with me but he’s always on my mind. As I was talking with this person, we got to talking about summer and a few of the things we…

3 Month CF Check Up

This visit has a little bit more excitement and a whole bunch of extra nerves when we walked into St. Vincent’s hospital this time. Last time we were at the clinic we were just waiting and hopeful for the news for Trikafta to be approved for Maddox’s age group, 6-11. The excitement started when I…