What’s new you ask? Let me tell you!

See, life is a journey and every chapter is very interesting – Zeenat Aman

Welcome back to the blog. Here is an update for 2023 as January and February have been quite busy.

Maddox has successfully transitioned to his new enzymes since the first of the year. His body has been tolerating the new medication almost seamless. We have not witnessed a huge increase in his appetite like we were hoping but I think we are still in the picky kid stage yet. he did grow in both height and weight, which is always a good sign as it could easily go backwards but still barely on growth curve.

Maddox also had his 6 month follow up check up with Dr Laura, his endocrinologist. After a physical exam, we were off to do his blood work. 7 vials later and we were out the door. We do have all the results back and everything is looking good. She said she would take a look at his blood work with his CF panel and see if we can push those appointments out to a year unless we have concerns otherwise.

The panels that she ran were also the CF panels to ensure that Trikafta is helping Maddox and not making things worse. The main concern is the liver panels and thankfully, everything was in range. This is such a comfort to hear. Hopefully we will be able to pull back on the number of blood draws. He is such a trooper for these blood draws, once we get the special goo on his arm, he barely flinches for these anymore. I, on the other hand, still have to look away and I need the distraction more than he does. What would we do without cell phones?

We have our quarterly CF appointment in a few weeks. I don’t envision much of an update at this appointment. The CF Foundation is working on trials to be able to pull back some treatments, the quantity of nebs, amount of time on the vest, etc. Granted they are still in trials and still collecting data but the CF Doctor from Milwaukee shared that the preliminary results of lessened treatments is looking positive for those on Trikafta.

For 2023, Maddox is the Great Strides Ambassador for the State of WI. We have been taking fun pictures and videos and sending them to the state office for their social media campaign. It’s been fun doing these mini photo shoots for sure.

In other news, I was honored to be awarded the CF Advocacy Award for the State of WI. Nick and I headed down to Milwaukee for a night of wine tasting (Yes, Nick was actually drinking wine along with the bourbon he found), snacks, networking and hearing of updates from the CF Foundation annual meeting. My team at work found out and sent me a BEAUTIFUL bouquet of flowers. Such a fun experience for sure. It was amazing to take a few minutes to enjoy it.

Then we had an extended weekend down in Texas for the annual tool fair. Our first tool fair of many, way to fun. While Nick was tied up in the conference all day, Maddox and I adventured out and saw some pretty cool stuff; Dude Perfect Headquarters, National Video Game Museum, Legoland, Fort Worth Stock yards, an arcade, glass blowing, Old Trains, AT&T stadium and actually hanging out at the conference. It was colder in Texas than it was back home, go figure.

Back home, we actually have had two snow days this year. That meant forts (inside and outside). We hung out with our neighbors and read them a story – fun fact, his name is Bob. 🙂 Played some basketball and gained a ton of confidence in the game by driving down the lane to shoot and a couple of steals. He also has been working hard graduating through karate belts, working his way to Black Belt Team 2. Next up is Purple stripe.

Next on the radar is to finish my class that I’m in and work on a few bigger projects at work. Maddox will be taking track in the spring, we’ll see if he’s as fast as mommy. Nick is working on growing the business in the area. We will be chatting more about the Great Strides walk in April in the next couple of weeks. That’s all I have for now!

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