Monday, August 1, 2016

Week 154: Holiday!

On Wednesday of this week, Lemon had his three year old check-up with the pediatrician.  His old pediatrician left, so this was our first visit with her replacement.  Overall, he seems competent enough and honestly, although he bears the title of “primary care provider,” he is really not anything of the sort—pulmonology drives our care start to finish.  But, it was a great visit nonetheless.  Lemon is hitting all his developmental milestones, is in great health “aside from having cystic fibrosis,” and most importantly, gained a pound in the last month (65th percentile for weight!!!!!!!!).  So, although I hate the bolus feedings that we’re doing 2-3 times a day now, at least they’re having the desired effect.  And, it somewhat comforting to think that if we could just get Lemon to eat 200-300 calories per day by mouth every day, we could give up the boluses and he would still gain weight.  It’s sad to think that we’re so far from even that tiny amount of oral intake right now.  In the last 24 hours, for example, his oral intake has been 2 bites of melon and about 30mL of Orangina.  It’s a start, I guess.

On Sunday, we left Madison for our family vacation in Lake Geneva, about a 90 min drive away.  It’s called the “Newport of the Midwest,” and like Newport, RI, it is filled with mansions from the 1890’s-1920’s, when the 1% of the day needed a summer retreat from the heat and smells of Chicago and Milwaukee.  There is definitely an element of the 1% still present, but the heart of the town itself is pretty much given over to families on vacation.  Our hotel room is huge, big enough for the staggering amount of equipment and supplies we seem to need to go anywhere.  It also has some really nice outdoor pools, which the kids LOVE.  We learned the math today—1 hr swimming = 3 hour nap.  In other words, brilliant.  It means even Papa Bear and I get to really rest.  Good thing, since we need energy to deal with the fact that, on top of everything else, Lemon decided to disconnect his feeding tube twice last night.  At least now the hotel room smells like home, with the cloying chemical vanilla smell of Pediasure in the air.

Since I’m on vacation this week I’m going to keep this brief.  We’re still sad not to be in Boston, but we’re enjoying this trip and feel like in the end this was the right decision for now.  It’s encouraging to see families with kids a bit older than ours, and to see the possibilities will open up for us again in not too much time.

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