Monday, August 29, 2016

Week 158: Fall color

And just like that, fall is upon us.  Our neighbor's red maple is showing its first hints of color.  The mornings are getting chillier.  Not so chilly that one can't go outside and ride one's tricycle in one's favorite short sleeved PJ's, should one chose to do so, although those days are coming. Honestly, I am already dreading the approach of winter and what it may have in store for all of us, but I try not to think about it too much.  Summer has been so, so good to us and I don't want to let it go.

This week, we have Lemon's orientation for 3-year old preschool on Wednesday, and his first day of school is Friday. I know that he will love it and that it will be good for him, and those two things make it worth whatever the risks are.  His new classroom will only have one teacher (as opposed to two last year) so I don't really know how she will manage to get enzymes into him at snack time with all the other kids milling around, but I suppose she will work out a plan.  I need to work with Lemon's nutritionist to come up with a plan to get extra calories into him on school days, since he will miss the bolus he usually gets with him morning snack while he's at school.

Speaking of which, we were scheduled to go to the CF clinic for a check-up on Wednesday before the orientation.  As many of you will recall, Lemon's doctor left our hospital about 6 months ago, and while they've been searching for his replacement, we've been seeing the nurse practitioner.  We were supposed to see her tomorrow, but I got a call this afternoon from the clinic saying she's going to be out, and that we will instead be seeing some other nurse practitioner.  One who's never seen us before and doesn't specialize in CF.  Yeah, I don't think so.  How is it supposed to be worth our time, and the risk of infection that every hospital visit brings, to see a practitioner that doesn't know us or our disease?  Suffice to say, I'll be calling the clinic back tomorrow morning to reschedule.



Other than that, I'm filling some of my copious spare time searching for a new afternoon babysitter for the boys, since our old afternoon babysitter just started her fall semester and her schedule doesn't allow her to take care of the dynamic duo anymore.  I feel like I've gotten mellower about this process, too--back when we first moved to WI, I led with CF--it was in the ads that I placed that our son had "a medical condition," which I'd discuss with candidates when I interviewed them.  Now, I don't lead with it anymore.  It's not in the ads, and I do ask if candidates would be comfortable giving a kid medication and can be scrupulous about hygiene, but that's it.  CF doesn't define who Lemon is, and I feel like leading with it just creates unnecessary anxiety.  Hopefully we'll find someone soon, or my own anxiety about actually being able to do my job will be well-justified!







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