Monday, April 24, 2017

Week 192: Keeping up

Now that we've had the G-tube for just over a year, it pretty much runs in the background. For a long time, as we were all getting used to it, every night had the potential for G-tube-related drama, but now we forget that there can even be such a thing. Of course, as soon as you set something on the back burner, it finds a way to remind you of its existence. Case in point being Thursday night, when Lemon was doing naked back-flips off of the couch after his bath, as one does, and somehow caught the edge of the button on some part of the couch and pulled the button right out of his belly. You would think that ripping something out of your belly to reveal a hole that shouldn't be there would be upsetting, but no. Lemon was way more upset about the fact that he had to stop doing back-flips and hold still so that I could put his new tube in than the fact that he'd ripped the old one out. 
On Saturday, while so many of you were out marching for science, I decided to forgo the marching and instead attend our clinic's annual family education day. One of the great highlights was getting to see some of my fellow CF mamas, whom I see way to rarely. In fact, while we were there we were trying to figure out how many times we'd actually seen each other in person after knowing each other for two years. It may be as many as 4 times. And, there was that one time where we went out to lunch together. Once in two years. We're aiming for another lunch in June some time--it's good to set ambitious goals!








Another great experience of the family day was the chance to meet an adult with CF. Thanks to all the advances in CF care (yay science!), more than half of CF patients are now over 18, but the adult CF community and the community of parents of kids with CF seem to be very separate. It was great to get to meet someone in his 30's with CF who is living life to the fullest--career, family, and a passion for running and cycling (he's a faster marathoner than I am), and to be reminded that this kind of future is out there for Lemon too as long as we do everything we can now to give him the best starting point for it.


One really interesting thing I learned from this guy is that in his opinion, manual chest PT is better than the vest. I'd actually heard and read that elsewhere before, but I hadn't really thought about it to deeply. It will be interesting to see as Lemon grows and becomes more able to express what he perceives about his care which therapies he finds work best for him. In the more immediate sense, though, it got me thinking about our travel plans for this summer. We have been trying to figure out how to fly with the vest, since it is too big to fit into the overhead bins of most of the airplanes that fly from our local airport. 

Talking to this adult with CF and hearing his opinion about manual PT made me think--I have to take my hands with me on this trip no matter what. Could we just leave the vest behind? After relying on it pretty much exclusively for almost 2 years, that seems like a daunting prospect. But, on the other hand, it would simplify things so much--imagine if we had to get through security and onto the plane with "only" two children under the age of 4, 1 car seat, 1 giant bag of medicine and food, and all the other assorted accessories, but we didn't have to bring the too-big roll-aboard and then try to negotiate with the airline people to find a spot for it on the plane? 







I have a trip for work coming up in 10 days (two nights with no kids for the first time in 3 years!), but once I'm back I think Lemon and I will start practicing our manual PT technique to see if this is a realistic possibility for us. We'll have to learn some new approaches, since the last time I did manual PT with him he was small enough to do it on my lap--not so anymore!




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