Monday, January 9, 2017

Week 177: Sneezles

By and large, what you read here is in my voice, but Lemon would like to share with you in his own words one of the things that is happening to him right now: he has the sneezles. A mild cold, a bit of a runny nose, and a fair amount of sneezing. He's feeling fine. In other words, the kind of thing that prompts me to react with "Oh no. Was that a cough or a sneeze that I just heard? Did I just heard him cough in his sleep, or was I dreaming? How many more days of Cayston do we have left? What if he starts coughing and we're still on Cayston? What if there are some sneezles left once the Cayston is gone?"

For months now, I've felt like I've been inhabiting a through-the-looking-glass world where at a superficial level, everything seems fine--Lemon is tall, heavy, pink, energetic, largely asymptomatic--yet my perception of it is that in any 24 hour period there's a significantly greater than zero chance that we'll end up back in the hospital. I suppose in a sense, I'm glad that this chapter will reach a conclusion sometime in the next two weeks. We have another 7 days of Cayston left after today, and if Lemon gets sick again within a week or two of that, we will go to the hospital. And, if he doesn't, I suppose we resume our regularly scheduled program of taking each winter day one at a time. I also suppose we'll initiate the process of getting our second 28-day supply of Cayston, because there are supposed to be 28 days off in between cycles, and experience teaches us that we will need all 28 of those days to execute the transaction.

For the past few months, we've been feeling pretty complacent about nutrition. Lemon was eating his usual diet of bits and pieces, but a little something a few times a day, and the feeding tube was taking care of the rest. He was gaining weight like a champ, and blood levels of all the nutritional markers we looked at were in the normal range. But, for the past two weeks or so, his eating has gone down to just about zero. As in, when I reflect over the time between Tuesday and now, I can list off-hand exactly what he's eaten: a grape, 1/4 of a turkey and cheese sandwich, a slice of apple, three bites of pepperoni, a handful of popcorn, a few sips of milk. Even by his standards, this is pretty bad. In past, I've noticed that his eating falls off when he's working on some piece of cognitive development, and once he's worked out whatever it is, he resumes his "normal" eating habits. So, I'm hoping that's what's going on here although this is a longer than usual dry spell--in the past, they've lasted a few days and we're going on a two weeks or more here.

One thing that's happening, whether it's a result of whatever advances in cognition are going on or as a result of our slavish adherence to the 3x/day PT sessions that are each made even longer by the Cayston administration, is that Lemon's getting bored of watching videos on YouTube. He knows what things he has to say in order to get us to pause the treatment ("My tummy hurts!" "I have to go potty!") and has been saying them with greater frequency. He also used to fight us about turning off the iPad when his therapy ended, and now he turns it off himself and jumps off the couch. I suppose I should have seen this day coming, but we were in such a nice space for a while with being able to leave him on his own during therapy and get some other things done (ie, showering). Recommendations for age-appropriate iPad games featuring trucks, anyone?

1 comment:

  1. I know what you mean about being hyper aware of every little cough, or raiding of the fridge saying "what's to eat!?!" (my boys are older at 16 non-cf and 13 wcf.) When the eating started I would keep an eye on the growth spurt and the length of their pants and the size of the footwear. Here's hoping that Lemon stays well.