Cystic Fibrosis · Life

Until November 

At least we hope so.  

We had our annual visit at the CF Center this morning. This doesn’t meant the only time in the year we visit – it means the one time every year that we see everybody on his multi-discipline team all in one appointment. 

Sometimes it gets pretty long. (A couple of years ago I did a blow-by-blow, if you’re interested in what it’s like.) Today we wete out in three hours. Honestly, it takes a lot of coordination to achieve this. Mad props to our CF Center staff. 

This is Levi’s favorite way to pass the time. He’s watching Scooby Doo on Netflix. He’s under the desk because the shade makes it easier to see the iPad screen. 

The staff finds us odd but harmless. 

I can’t tell you how much easier this has been in the last couple of years, compared to when he was little. Now if I have some cartoons and a few snacks, we’re golden. 

I’m delighted to be able to report that he’s doing well on all fronts. There’s a drug trial running right now that he could potentially be a part of, but he doesn’t qualify. His lung function is too good. (Words a CF parent will never, ever get tired of hearing.)

We celebrated at Wendy’s (yes, queue up Big Spender on the jukebox). 
 Unless he gets sick (and the beginning of the school year can be a little dicey) we don’t have to go back until November. 

So things are good. 

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