If you haven’t already heard, Maddox is going to be a big brother!!! Baby girl Carlsen is expected in May 2026!  Even writing that still feels surreal. Not just because of what it means for our family, but because of the long, complicated, painful, yet grace-filled road that led us here. For over a year leading…

It’s been 8 weeks since Maddox started Trikafta. Eight weeks!! So far, so good. He takes it like a champ, and it has already woven itself into the natural rhythm of Maddox’s daily treatments. He’s had one round of his monthly lab work since starting Trikafta, and praise God, his results looked great. He has…

If you’ve been following along, you probably aren’t surprised to hear that now that Maddox has turned two, he’s officially eligible to start Trikafta — the “as close to a cure” medication that’s changing the lives of many people with Cystic Fibrosis (If you’d like to learn more about Trikafta visit: CFTR Modulator Therapies or read about…

May is Cystic Fibrosis Awareness Month, and this year Maddox’s journey was honored in two very special ways. We completed our very first “Walk to End CF” as a family, and his preschool held a very special “CF Awareness Day” in his honor. The Walk Just participating in the walk this year felt like such…

I wanted to dedicate a blog post to Maddox’s absolutely incredible grandparents – his Nana and Buppa (my parents) and his Gigi and Papa (Adam’s parents). I have seldom directly mentioned them in my blog posts, but in reality they have all been so graciously and lovingly serving Maddox and our family behind it all.…

I figured I was due for a blog post as we just wrapped up the 2024 year. So much has happened with our sweet (and quite crazy) Mads since my last post in June, right before his first birthday.  Maddox is now an 18 month old firecracker. He’s running and jumping and biking and giggling…

A letter to Maddox on the night before his first birthday: Maddy boy,  You turn one tomorrow. How can this be?  It was just moments ago that my eyes met yours and in an instant I felt deep purpose. It was the first time we met, but oh, how I’d known you for a lifetime. …

One year ago, today, we received Maddox’s Cystic Fibrosis diagnosis (read my reflective and raw blog post that details it all here). Here are 10 things I’d tell the February 13, 2023 me:  One year ago, today, I was crushed in spirit… now, I’m more whole.  One year ago, today, I was scared… now, I’m more…

It’s the last day of the year that built me. 2023 has transformed me physically, spiritually, mentally, and emotionally. Because of this year my body will never be the same, my heart will never be the same, and my mind will never be the same. In January of this year we announced our pregnancy to the world…

A lot of the time when I’m asked how Maddox is doing it’s kind of like “how’s Maddox doing?” There’s an undertone that the question is pointed towards his health. Don’t get me wrong I appreciate this so much. I love how many people care and check in. And it does matter, how’s he’s doing health…

When you’re trudging through a wilderness place in your life, you can feel small. You may feel like your problems don’t stack up against the world’s or that God’s voice is a distant echo. You may look left and right and compare yourself to others. You may get discouraged. You may wonder at times if…

In motherhood and in life, some days are just tougher than others.  The other day I had one of those tough days. The days where every “little” thing that could go wrong, goes wrong. One thing after another and with dwindling patience and grace, I was lead to a breakdown. Let’s just say I cried…

As Maddox is growing, so am I.  Never have I witnessed the tangibility of growth until I have watched the life we created grow in front of my very eyes. As of yesterday, Maddox weighed 8 pounds 12.5 ounces (yes, every half ounce counts!). He is gaining weight exactly how he should, we are so…

In my previous post I mentioned that “in time” I may write about the initial heartache, grief, and overcoming of receiving Maddox’s CF diagnosis. I guess this is the “time”. I was recently going through a journal that I keep and saw that my last journal entry was on June 8, only 6 days before…

I wanted to write an informational blog post to educate others about Cystic Fibrosis and explain a bit about Maddox’s specific CF story. I hope this page can serve as a living document and can be used and re-used and updated as the landscape of CF continues to evolve. This is a lengthy post, but…

This past week we went to our first CF clinic visit. We feel so blessed to have an amazing team of doctors, nurses, social workers, physical therapists, nutritionists, genetic counselors, research coordinators, and pharmacists that we meet with on a regular basis and are all very in tune with Maddox – personally and medically.  The receptionist…

One week home with our Maddy Boy! In some ways it feels like it’s been a month and in other ways it feels like a blink of an eye. I imagine this past week has been similar in a lot of ways to any other first week at home with a newborn with a few…

I held off on posting yesterday because we wanted to make sure Maddox did well last night so that we could tell you … we are going home today !!!!! I will post more later, today is a crazy day. But we are feeling blessed beyond measure. All His promises are yes & amen.

Today started with an unexpected surprise. When we made our usual, routine journey up to the NICU this morning to see our little boy, we were told he got moved across the floor to the Continuing Care Nursery (CCN). We were so excited. This is basically a “step down” from the NICU and is a…

The end is in sight. Maddox is continuing to make progress and if everything continues to be stable with no crazy events we should be out of here in a matter of days. So if you’re reading this and you’ve been praying, pray specifically for a boring next few days! No episodes, steady temperatures, good…