We are quickly closing in a milestone within our CF Journey and I’m curious of everyone’s thoughts!
Just about 6 months ago Maddox started a new chapter in his CF journey, Trikafta. This medication is the first modulator that he has been eligible since his birth and diagnosis. With the mutations he has, he was not eligible for the earlier medications. As you might remember, as we were getting closer to his 6th birthday we were doing everything we could to keep him as healthy as we could. His birthday rolled through, a few hiccups with the insurance and here we are 6 months later since the the medication was on our door steps.
Trikafta definitely lives up to surname – Tri. 1)A sense of relief that were able to get this medication for him and that he is healthy enough to take it. 2) A sense of fear; will he have negative reactions to the medication, will it help him at all, will it make things worse, what do we need to watch out for? 3) A sense of hope that the doctors and researchers are on to something to be able to help really find a cure for CF.
Here is my best attempt of a side by side of him. As a mom, I look at this picture and I try to will myself to see the changes and then there are times that I just don’t the huge impact we were looking for (yet).
One of the things we are trying to tell Maddox is that he will never be the tallest so he needs to learn to be the quickest/fastest and the smarter one. He will need to hone in on everything else he can bring to the table. And then I need to step back and remember – he’s 6. Let him be himself and grown into his own when he’s ready.
This kid is so smart. He comes home and can do huge addition and subtraction problems, writes stories, reads big words and tells us what he learns in school and retains it like a sponge. Such a proud parent moment for us as we have watched him grow mentally in the last 6 months for sure.
Here is to another 6 months of being on Trikafta.
By the way, how much is a tooth going these days, I have a feeling we’ll be losing some baby teeth in the next few months too!