Today is good day to have a good day.
It’s about that time again for our quarterly check up with Maddox’s CF team. Today is a bit difference as Nick and I are celebrating our 10 year anniversary. 10 years ago it was probably the hottest day of the year, rained in the morning, great food and a ton of great memories. Never did we ever think that for our 10 year we would be hanging out at the hospital hanging out with our son’s CF Team. It is what it is! Here’s our update.
Our appointment started with our fill in RN nurse since Billie was on vacation and she had a heart of gold. Maddox was on the bed playing with games while Nick and I were on the other side of the room so we weren’t by him at all. At each of our quarterly check ups we have to do the throat swab. She sat with Maddox for what felt like forever (but was probably a few minutes) on coaxing him to do the throat swab by himself. And they did it together! Not even a tear!
Then he met with the rest of team. Laura our RT was working on a challenge with Maddox to see who could blow the cotton ball across the bed. Maddox was able to keep up with her. We are working on different exercises that he will need to do when he gets older to measure lung capacity/function. For now, he was all giggles to see who could do it better. Julie (his PT) and Laura (RT) were both excited to hear that he is in sports and that he is able to quickly recover when he loses his breath which is a concern for CFers. Once they lose their breath that it’s hard to get it back.
We still haven’t cracked the 30lb mark yet but we are so close! So more ranch and whipping cream as milk to add in the extra calories. Sumedah, our geneticist, along with Suzanne, Sheri were also there to discuss what is coming down the pipeline for his mutations. Right now the FDA is the in process of approving a bunch of the medications for the double CF mutation for younger patients and approving trials for older patients of the single mutation and that the trials for the younger kids should be coming around soon. This means that the CF team is watching the news and keeping an eye with his mutation to see if/when we could be next (6 months – a few years down the road). We did also learn that the average life expectancy has risen to 47. When we started our CF journey with Maddox it was 41 years old.
Then Dr Pete walks in, sits and hangs out with Maddox. The talk of today was the difference between real food and not real food. Maddox was in a full sassiness mood. Dr Pete would ask what peas were and Maddox would start giggling that it wasn’t real food. He said that steak wasn’t real food either and I looked at Nick in the chair next to me to make sure he wouldn’t faint. Dr Pete listened to his lungs, heart, nose, throat, and did the rest of the normal exam. His big concern again was his lack of weight gain and just laughed that Maddox truly did know the difference and he was going through a typical kid phase for being a picky eater. He said just to keep fighting the good fight and keep doing what we’re doing as he’s doing great and we were out! It was a great appointment and we ended up eating our anniversary meal at Lambeau field and had a great evening together as a family!