The future is something no one can predict. But I can tell you that based on the past and what was shared at the Volunteer Leadership Conference this past weekend, the future of CF is going to continue to change. Change can sometimes be good and bad, but in this instance, things are looking so…
Author: maddoxblogmom
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…
Getting Organized is a Sign of Self-Respect
2023 is going to be the year where my organization skills, trips and tricks are really going to be tested and I’m ok with that. This year will be the year for adventures. Keep an eye out for all the posts from the updates. To start off, Maddox is transitioning his enzymes at the start…
Mixed Bag of Emotions
How can a person feel so helpless and hopeful in the same breath of air? I ask because that’s me! Maddox had his quarterly CF appointment recently. Dr Pete stated that Maddox is a healthy little dude. His lungs sound good but he’s still a little one compared to all his peers. He kept shaking…
What a Milestone
If you are reading this, you are reading our 101th post on the Team Maddox Blog. Congratulations that you have stuck with us throughout our CF journey so far. I didn’t even realize we had 100 posts until I got a message from my blog site that stated congratulations. Oh – that’s pretty cool. The…
Health is not valued until sickness comes
“Mom, I don’t feel good.” The dreaded words that make every parent’s heart ache for their kiddos. And then there is me. Broken hearted every time he says these words and I know his healing and recovery will be twice as long as kiddos his age. A CF’er already has the struggles of feeling like…
2022 CF Awareness Events
November – the days are shorter, the weather generally turns colder and it’s a great time to reflect on all the things we are thankful for. The year 2022 brought opportunities for CF community awareness events throughout the calendar year and it was so much fun. As I have shared, lung function is vital. Maddox…
As the Season Turns
Fall – not my favorite season. Personally, I am allergic to everything growing right now and will be in allergy hide out until the first frost. The days are quickly getting shorter and colder, my flip flops are traded in for boots, my tank tops turn in to sweatshirts and the tan that I had…
1 Trip around the Sun
365 days = 1 trip around the Sun. We can officially say that Maddox has been on Trikafta for 1 lap around the sun. What is Trikafta? TRIKAFTA is a prescription medicine used for the treatment of cystic fibrosis (CF) in patients aged 6 years and older who have at least one copy of the F508del…
Most Recent CF Appointment
There was a point in my life that I absolutely hated going to the hospital and doctor’s offices. The really bright lights, everyone in scrubs, furniture that was extremely uncomfortable and the sterile smell of all the cleaning chemicals. I still don’t look forward to parking in the parking lot of the hospitals and the…