Jaxson's Journey

11/22/2025

💧 Salt & Cystic Fibrosis 💧
People with cystic fibrosis lose more salt through sweat than most — making it important to stay balanced every day.
Adding a little extra salt at meals or using electrolyte drinks can help maintain hydration, energy, and overall wellness. We utilize Gatorlyte by Gatorade and Liquid I.V. on game days with a little extra sea salt on breakfast and dinner.
Stay strong, stay balanced, and take care of your CF body year-round!

10/24/2025

Individuals with cystic fibrosis require additional calories for several reasons. Although they may take pancreatic enzymes, they still cannot utilize 100 percent of the energy they consume because enzymes cannot break down everything they eat or correct their problems with nutrient absorption. Going about daily life while fighting infections and coughing regularly burns extra calories. Maintaining a healthy weight — and sometimes increasing it — is key to fighting infection and keeping your lungs and body strong.
Currently, Jaxson consumes somewhere between 2500 and 3000 calories a day, and he is on the maximum dose of enzymes for his age/size to help him absorb the nutrients from the food he consumes. He also takes a CF-specific multivitamin, additional vitamin D in pill form, as well as an OTC multivitamin.

10/12/2025

Beautiful night for hockey 🐻💙GO BLUE 12/OC

10/12/2025

🐻💙We had an excellent opening weekend at the Alfond, with a sweep of Holy Cross. We had the pleasure of meeting Mike Grinnell from Spittin Chiclets podcast. We enjoyed live music and spent time with our friend and Bruin legend Steve Leach. Brandon Chabrier posed for a photo with Jaxson after last night's game and on our way to the car, Coach Alfie gave Jaxson another puck. Coach may have also chirped him a bit but we wont go into that. 🤣
🩺🩻 On a more serious note, we received the results from Jaxsons ultrasound and everything looks normal. He does have an enlarged liver but we already knew that. We will be making changes to his diet to see if that helps with his symptoms.

09/28/2025

We attended the ribbon cutting ceremony and toured the renovated Alfond Arena. The upgrades are remarkable. Jaxson's on-ice practice starts Thursday, and the first Maine game of the season is scheduled for Friday. It's our favorite time of year again.

09/24/2025

Jaxson also has 2 nonsense gene mutations, making him ineligible for the new medications. When he was born, he was the only person in the world documented with his gene combo. To this day there is only one other child with the same mutations. As we celebrate the progress made, we hope and pray that the 10-15% are not forgotten.

My sister and I have shared so much — childhood joys, crowded bathrooms, and now, the fight for those still waiting for the promise of CFTR modulators.

09/15/2025

🌅Up early this morning with a smile on his face for an elastography ultrasound. Jaxson's blood work has been coming back slightly abnormal so we are searching for a cause. Fingers crossed it's nothing serious. The only thing he didn't like was that he had to fast. Now off to school. 🏫

08/23/2025

Jaxson's medication came for the month.
We are so thankful we are able to get these shipped from The Pharmacy at MaineMed. The specialty department and his team even make it easier by calling us when he is ready for refills.

08/21/2025

Here is a little glimpse into Jaxson's clinic appointment yesterday. We began with Pulmonary Function Tests (PFTs), which are essential for managing cystic fibrosis and maintaining lung health. 🫁

PFTs measure various aspects of lung function, including lung capacity, airflow, and gas exchange. This test can identify early signs of lung disease in individuals with cystic fibrosis, often even before symptoms arise. It tracks even the slightest changes in lung function over time, enabling doctors to adjust treatment plans as necessary. Additionally, PFTs can reveal the effectiveness of any adjustments made to care plans. Jaxson undergoes these tests approximately every 3 to 4 months.

08/16/2025

Morning stretch and warm up with Jeremy Swayman at the UMaine Goalie Camp.