I'm not quite convinced that we actually had spring here, but it does seem like we are moving inexorably towards summer. Our garden is a green jungle once again, tree pollen fills the air, and it is possible to imagine (if not routinely achieve) leaving the house without a jacket.
With the impending arrival of June, we are coming up on our next clinic visit. It's been a fairly good 3 months, I would say. Our first antibiotic-free 3 months since sometime last year. If only we had the weight gain to show for it. Despite little or no puking, Lemon's weight is stubbornly stuck at about 45lbs, or 4lbs lighter than he was at the end of last summer. Papa Bear and I discussed it this evening and agree that, even though we don't really want to, it is probably time to consider increasing the volume of his tube feeds. Lemon still shows little to no inclination to eat anything resembling the amount that he would need to in order to make a meaningful contribution to his caloric intake, and it's pretty clear that his needs have increased since the last time we changed the tube-feeding formula. He's taller, and VERY active. As in very. So, one of our top goals for this clinic visit is to figure out what our new plan should be. We know coming into the school year with a lot of "strategic reserves" on board is probably the thing that kept Lemon out of the hospital this year, a feat that we'd love to replicate next year as well.
I guess I can finally concede that we're never getting that extra set of liver labs done; we're just waiting now for the big lab draw that will happen at this clinic visit instead. And I am fine with that. I think having as un-medicalized a 3 months as possible was totally worth it for Lemon's mental health, and hopefully draw at the clinic visit (plus the ultrasound that we're doing at a separate visit) will be enough to decide whether we will continue on ursodiol or try to taper it.
Amazingly it is now time for summer planning to kick into high gear. As usual, our schedule is complex, with many moving parts--trips, visitors, camps, random days where the kids don't yet have any plans but where we need to work, etc, etc. It also occurs to me that various camps will need to be trained in the art of enzyme administration. I'm so glad we taught Lemon to swallow pills last summer, though, it makes things so much easier. Now if only we could find an easy way to prevent him from hitting his brother all the time, we'd really be somewhere!
