And just like that, here we are for another quarterly CF check up. This is just nuts of how time is flying that it’s hard to stay up on things. When the pandemic started and we had our stay at home orders, I was mentally thinking to myself; I’m going to read more books, keep up with the house and enjoy this time as I’m sure it will drag since everything is cancelled. Yea right! Here we are 6+ months later of Covid, 3 months since the last blog post and it’s amazing how much we crammed into summer and fall! Here is the CF update and of course pictures of Maddox.
Maddox had his CF appointment in October and his well child visit in late September. In chatting with Billie, this would be our last CF appointment for the calendar year which means that it’s our big appointment. I asked Billie if the pediatric team for Maddox’s well child could do the blood draw and xrays since they are faster at it and Doc Pete could review the results before we got there. Covid still only allows one parent at all doctor appointments so Daddy took the well child visit, blood draw and chest x rays while I took the CF appointment. To be honest, I really don’t have much to report on this CF appointment as it was really uneventful and I am so thankful for that.
He plateaued in weight gain (we also cut way back on our ice cream consumption now that it’s getting cold out), he didn’t grow taller much and his PFTs were all in line. His chest x rays are clear and his Vit D level was right in line of where it needed to be. Now we know that he can at least absorb Vit D and that his levels really drop that far in Winter. I think we’ll just have to go to the beach in winter ;). At this point in his CF time frame we are in a pattern that we need to keep him as healthy as we can in preparation for Trikafta. The latest update that I have is that the trials for 6-11 year olds has wrapped up and all information is being sent to the FDA for their evaluations. We are hoping for an amazing birthday present for Maddox when he turns 6. Maddox and I headed up from our appointment with his Christmas present from the CF team.
Maddox started Kindergarten and his school district is one of the few in the area that is teaching in person. We met with his team and explained CF and the enzymes and she actually knew someone else with CF. She knew all about the enzymes, differences in coughs and runny noses which is such a relief to know she won’t send him home that fast if his issue is CF related and not COVID. I dropped him off on his first day of school and he was so excited because he knew other classmates as we were waiting for the doors to open. After school that day, I picked him up and he was all smiles “Mom, I had the best day ever!” Which is exactly what I needed to hear to know we are making the best decisions we can during these crazy times.
Through the end of summer and start of fall, we have spent as much time as we can outside; hiking at near by parks, apple picking, pumpkins and of course his favorite – baby goats and bunnies. We are doing the best we can with what we have while we still have the warmth and sunshine as Winter is going to look so much different for us this year.