Monday, February 4, 2019

Week 285: Vortex Redux

It's good to occasionally be right about something, even if it is something you would prefer not to be right about. In this case, for example, I would have preferred not to be right in terms of my prediction that schools would only be open one day last week. Alas. We managed it somehow, although as with most of these things, in retrospect I am not sure exactly how. It was a growth experience for everyone (note: given the kids new toys with LEDs and musical sound effects is a mixed bag). And, honestly, I don't really second-guess the school's decision to close, it really was too cold for the kids to be outside. I myself only went outside briefly and wearing every piece of clothing I own, and it was bitter out there. This weekend, of course, it was over 40F, just to mess with our minds.

 From the perspective of things I was wrong about,  I was wrong about which week our clinic visit is. It is in fact this Wednesday, not next Wednesday as I had thought. Luckily, eating and tube feeds have been going well and we have managed to get back to where we were in early December! I am using an exclamation point to try and cause myself to be enthusiastic about this fact. We have done far too much work to be standing still, and yet of course things could be much worse, so I should be enthusiastic.









Just to keep things interesting, this week has been laden with scheduling shenanigans. Lime was supposed to go to the dentist on Wednesday of last week, but they had to reschedule his appointment due to extreme cold (this is a thing that happens in Wisconsin it seems). But, they had a spot open this coming Wednesday morning. Yay, until I realized that despite 5 years of parenting I can't actually be in two places at once and Lemon's clinic visit has to take priority. So Lime is going to the dentist in late March, when hopefully weather will be less of a factor in oral health.




Lemon is participating in a clinical study where he is being asked to do some extra tests, including a multiple-breath washout test. I decided it would be too much to tack it on to our already long clinic visits, so I would schedule it for a separate day. I chose this coming Friday, because school was going to be randomly closed. Yay, got that all set up so it would not disrupt his schedule. Then, the school district decided that, given that they missed 4 days of school last week, they would be open on Friday after all, so now I have to pull Lemon out of school for a few hours on both Wednesday and Friday. Fantastic.

I'm thinking the one upside to keeping the appointment on Friday is that maybe at long last we will get his liver labs drawn. We got the orders put in way back when we had our consult with the GI doc months ago. But, I wanted to make sure Lemon was healthy when the labs were drawn, since in the past his liver labs have been high when he's fighting off something. And, well, honestly we have not had enough healthy weeks since the GI consult to actually get the blood drawn. But, this Friday, I'm hoping. Keep your fingers crossed for me!