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…

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…

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 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….

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…

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…

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…

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,…

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…

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…