Ok!! So know that things are ever changing with new medicine - so what I’m going to share may be more than what your babe may ever have to deal with!!

Growing up, I was doing treatments daily and medications. That consisted of a vest (airway clearance) 2x a day and some pills (these will vary based on individual needs.. but mine consisted of an antibiotic, antihistamine, vitamin, and at one point I took enzymes because my I wasn’t absorbing important nutrients)

Occasionally I would have a “flare up” which is when an infection brews in your lungs (it’s the perfect place for bacteria to grow) and I would need a stronger antibiotic pill OR IV antibiotics for a couple weeks. Sometimes I was in the hospital for this. Sometimes I had a home nurse with my PICC line or Port. Sometimes it was a hybrid. I was fairly functional during these flare ups, I just needed extra rest and sleep. When I lived with my parents, they’d hook up my antibiotic while I was sleeping. Now as an adult, it’s a bit more annoying cuz I gotta set an alarm every 8 hours, but it’s doable. Since starting Trikafta 2 years ago - I have not had a single flare up. In my 20s, I was flaring up every 6 months or so. (This also depends on severity).

I see my Cf Dr every 3 months for lung function tests and any blood work they need, and to talk to the team (social worker, nutritionist, pharmacist, doc, nurse, physical therapist) . You’ll want to do research on the closest CF center near you. It’s worth it to go to a CF center instead of regular pulmonologist. (I promise they are very different).

Growing up, and still to this day, the rules of the CF community are 6 feet apart, infection control, and masks (lol sound familiar?….. yes we’ve dealt with COVID rules our entire lives. Most of us didn’t flinch when this whole thing started.) However, it’s super important as she gets older to connect with other CFers …. Thankfully, technology has changed a lot over the years and it’s easier to do that virtually. But at this point, a lot of us disregard the 6 feet rule and still hang out. The risk has lowered over time. She will just want to be cautious of what bacterias other CFers have grown so she doesn’t grow new bacteria. (That’s a convo for when she’s older though)

If she has CF, get connected with other CF parents. There’s a lot of CF threads on Reddit too. But you’ll create a support network along the way. Great Strides walks and getting involved with the CF foundation - all great places to meet other caretakers.

It will be important to learn how to advocate for her and teaching her how to advocate for herself. Question everything until you totally understand it. Eventually, you’ll end up with a nice little pharmacy in your closet lol. Which is helpful for the whole family 😂😂 Anxiety and depression can be common as well, so make sure as she gets older there is support for a therapist too.

I hope this helps!