Quarterly CF Check Up

Today was our first quarterly CF check up and our first doctor appointment since our “Stay at Home” orders were given in March. A week before our appointment, Billie called and asked us the typical questions (any fevers, any pending COVID tests, been near anyone that has it, etc.) Then the day before she called and then the it was the morning of our appointment and it was a busy day ahead of us.

Since only one parent is allowed to accompany their child, Maddox and I headed to the hospital. Maddox is a trooper wearing his Green Bay Packer mask so walking into the hospital was a breeze. Bluebear and Maddox get through the registration process relatively quickly and we are in the elevator on our way to the 5th floor for our CF appointment.

Once we find our room, Billie comes in with our quarterly questions;how is everything going, anything new, how are the eating habits, energy level, etc. Then it was time for the quarterly throat swab – this kid is becoming a professional. He flinched but he didn’t move and she was able to get probably one of our best samples yet.

Then we head to the measurement room, here he gets his height and weight taken. Today, we had a sweet retired RPT take us for this lung capacity testing as soon as he was measured up. Since Maddox’s birthday is coming up, we ‘bowled’ a few frames and then blew out the birthday candles. So proud of my lil dude, he had some of his best tests as he is learning the technique. We wrapped up and headed back to our room for our team checkins. Sumadeha brought CF Foundation information and we chatted a bit.

Next walks in Tammy and Sherry. I usually dread our conversations with Tammy as we know we need to be packing on the weight by adding as many calories as we can, adding extra salt and anything we can do to make his meals count the most. When Tammy pulled up his growth chart today, it took my breath away. He gained over 2 lbs and is in the 46th percentile for his age bracket for height/weight. You guys! He’s NEVER been this high before!! 🙂 This summer we have been swimming, running, playing sports, out to the farm and just keeping busy that I was afraid he was burning everything he ate and to actually come out ahead is amazing to me! Fist pumps for everyone in the room for sure! Tammy asked what changed and I contributed it to a few things – daddy got a smoker grill and Maddox has loved everything off of it and almost every other day (sometime every day) we were getting ice cream. Then during our stay at home, this kid was going through strawberry milk like crazy (I know, it’s loaded with sugar and red dyes but he was drinking a ton of milk). Grandpa Dave even went on a special trip to store to get it for him.

One of things we have been working really hard on is keeping Maddox’s vitamin D levels as high as we can as this is just a struggle for him, especially in Winter in WI. Every day we are taking gummy vitamins and being outside as much as we can stand just to build that up. We’ll see what happens in WI when we have our blood draws at our next visit.

Next, Sherry went through his med listing and asked if we had any questions or concerns. With Tammy and Sherry, Maddox shared everything he had been doing this summer; fishing, hanging out grandparents, best friend Ollie, swimming as much as we can and starting T ball, which our first game is tonight!

Doc Pete walks in and does a quick exam and mentions that Maddox has seasonal allergies. I confirmed as my allergies are terrible this time of year and that everyone in the house has been taking allergy meds. We talk a few other details about the plan for school, how daycare is going, and back up plans. Doc Pete told us to keep doing what we’re doing and we’ll see you in a couple of months! We’re outta here!

After leaving the hospital, we headed home for our first T- Ball game. Baseball is one of the few sports where we can try to apply social distancing as best as we can while still trying to have a slice of normal life. This past Sunday we had practice in July, at 9:30am morning it was already over 80 degrees and 70% humidity – it was miserable but the kids were troopers and were able to practice batting and running the bases. But of course in true fashion, we were rained out. All good as we have another game scheduled later this week. Stay tuned for an end of Summer update!

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