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 and saying and singing far too many words to count. 

2024 came with a lot of “firsts”. Some firsts came with a challenge, some with a victory, but all of them brought much growth. Here are some of the “big firsts” from the year: 

First Birthday: 

Maddox celebrated his first birthday in June surrounded my family and friends in our home. His birthday theme was “My Rookie Year” and goodness did he look adorable in a little baby-sized baseball outfit. This was also one of the first times we’ve had that many people (and we still kept it pretty small) in our home since having Maddox. We were anxious that morning due to the possibility of spreading sickness, but oh how Maddox lit up the whole day and soaked in every second (and every bit of frosting too!!). This was one of the first times (of many) this year I noticed how much Maddox thrived being around others and how his silly spirit lights up the room – something I know he will carry to many corners of his life. 

First Big “No”: 

I’m not talking about a first big “no” from Maddox, although he definitely loved and used that word quite frequently this year! In June, Adam and I had to be a fierce advocate for Maddox and through much prayer and deliberation, we said “no” to the doctors at his clinic that wanted to surgically insert a g tube (feeding tube) in an effort to help him gain weight as he was much underweight. We stuck with our guns and knew Maddox was about to start eating more solids, and eventually get Trikafta in the following year so we felt strongly a feeding tube was a major life shift to make when a miracle drug is already on the horizon for him. We also had faith in our little guy and in God and thought he may start gaining more weight on his own soon. And praise God, it’s the end of 2024 and he’s in the 30th percentile (up from the 1st percentile for most of his little life)  and he’s absolutely thriving. Sometimes saying no leads to the biggest blessings. 

First Steps: 

In June, Maddox also took his first steps to his favorite song “We Will Rock You” which we quite literally listen to at least twice a day in our household. Maddox frequently says “Alela (Alexa) pway wewooweewoo (play we will rock you)”. Now he’s running and jumping and riding his bike in circles like a wild man around the house. 

First Vest: 

As some of you may know, one part of CF management is utilizing a vest. Maddox wears a vest that hooks up to a fairly large machine that vibrates his chest. We do this to break up the sticky mucus in his lungs and prevent infection. This replaces the manual chest PT we were doing with the cups (mentioned in previous blog posts). We eased him into it and during his first session, although a little confused, he settled right into it as if it were normal to him. We do this twice a day for 10-20 minutes (always sitting on a lap and usually watching his favorite show). He’s such a little warrior. 

For more information please visit: https://www.cff.org/managing-cf/chest-physical-therapy and https://www.cff.org/managing-cf/high-frequency-chest-wall-oscillation-vest

First Nebulizer: 

Maddox is now also doing inhaled medication through a nebulizer once a day, and three times a day if he’s sick. He doesn’t like this quite as much but we’re making progress! 

First Sickness: 

In August our whole family got Covid. My biggest fear set in. It’s a miracle in itself that Maddox was 14 months old before he got even a whisper of sickness. We can be proud that we protected him for that long although after much reflection, I’ve learned there were possibly moments and memories Maddox and I missed out on due to the fear of sickness. After I realized how victoriously Maddox kicked this sickness to the curb, sickness became a little less scary and our Maddox proved to be the strong and fierce little rockstar I knew he was born to be. 

Nonetheless, sickness with CF is not an easy feat. We had to increase his treatments to 4 (15-20 minute) sessions a day with 3 sessions of inhaled medication. This makes it very hard to balance work, sickness and care for him amongst all of life’s other demands (not to mention when we are sick ourselves). Any parent knows taking care of a sick child is trying. These extra layers don’t help.

It seems as though Maddox has caught something every other week since this first sickness. This is probably partly due to the fact that for Mads, it just takes longer for his body to clear sickness so it lasts quite a while longer than normal. With every sickness, however, we all come out stronger and more equipped to fight the next one. 

First Ear Infection: 

In August Maddox also got his first ear infection and received three rounds of antibiotics to fight it. This is just a “normal kid” thing, not CF-induced. While still difficult, there is a part of me that had some relief knowing it’s “normal” and for once not tied to his disease. 

In fact, the only thing to be concerned about with ear infections with CF kiddos is being mindful about antibiotic resistance. Individuals with CF tend to go through many types of antibiotics in their lifetime in an attempt to get rid of chronic infections. In doing so, many build up resistance to multiple different antibiotics making infections harder and harder to treat. In Maddox’s case, we wanted to ensure introducing a few different antibiotics so early in life wouldn’t be detrimental in case he built up some resistance to a couple of them (which it appeared he may have with the aggressive ear infections that keep coming back). Maddox’s primary care doctor was aware of this and asked Maddox’s pulmonologist to which the pulmonologist replied “you should not be worried about this at all. Due to Maddox being able to get a modulator (Trikafta) at age 2 antibiotic resistance and prolonged use of antibiotics will actually not be a problem he will likely face in his lifetime.” Relief swept over me when I heard these words and with tear-filled eyes I was once again reassured by just how close we are to him being eligible for his “miracle medicine”. So close. 

First Family Vacation: 

We took our first big family vacation with my side of the family to the beaches of the Jersey Shore. We endured a 12 hour car ride, heavy on the word “endured”. Maddox actually did great though, all things considered. We were both exhausted by the time we got there (pictured below). It was a relaxing time filled simply with walking to the shore, playing in the sand, pointing at seagulls, and eating pizza and pastries. 

First Day of School: 

In September, Maddox started his toddler program at preschool. Everything we feared in terms of sickness quickly became a reality. But in the same breath (no pun intended), everything we knew would be a blessing also became true. Maddox loves his teacher. He quite literally is attached to her hip and I’m convinced she’s an angel on earth. She administers his enzymes and understands the dosing, knows his risks, and even more importantly knows his little personality and loves on him so well. She even included a snippet about Maddox and his CF in the school newsletter. She so eloquently educated other parents about him and made it clear how pertinent it was for parents to be vigilant about sickness. In her words: “It is essential that we work hard to mitigate germ exposure in order to help keep Maddox (and everyone else!!) safe and healthy“. I read her words with tears falling down my cheeks knowing he’s in safe, loving hands. 

Exposing Maddox to being cared for outside of me, Adam, Angie (Adam’s mom) and my mom has been a paralyzing decision at times, but I feel beyond blessed for all of these angels on earth.  

Not to mention he’s absolutely obsessed with the other kids – especially the “big kids” (the preschoolers) who he calls “babies” and loves to give many many kisses to everyone (on the cheek please, buddy!!). Once this kid warms up, he’s goofy and cuddly and has enough personality to fill an entire playground. 

First (Minor) Surgery:

In early November, Maddox had an appointment with the Ear, Nose and Throat specialists in Portland to discuss the possibility of ear tubes due to his recurring ear infections. He ended up getting the surgery the next week (by the grace of God) and he did great. Seeing his little body in a tiny hospital gown wasn’t easy on my heart, but it was a routine and quick procedure and he’s already seen less sickness and infections because of it. 

Other Firsts Worth Mentioning: 

• First snow
• First tooth
• First Mother’s Day
• First Easter
• First sleepover at Nana’s 
• First boat ride with Papa

(among so many others!) 

So here’s to 2025. A blank book waiting to be filled. Perhaps this year the pages will be colored with more firsts, more challenges, or more victories. No matter what our story is this year, I know it will produce steadfastness and courage; joy and overcoming. What a privilege to allow the author of the universe to fill in the blanks while we trust in each chapter.