This week marked another milestone of sorts: four years since we moved to Madison from our long-time hometown of Boston. It's been both forever and no time at all. I had a chance over the holidays to catch up with a few of the wonderful friends that we made while we lived there. Although, ironically, none of the people that I talked to actually live in Boston anymore, there's been quite a diaspora over the last decade or so. Still, I miss all of them dearly and wish there was some way to teleport around the country to see all of them more often!
One thing I definitely noticed this week was an overall uptick in Lemon's eating. I don't know if he decided to turn over a new leaf for 2018 or what, but all of a sudden he's trying more thing and eating more of the things he tries. Still not anything that would register as the volume of, say, a normal meal, but definitely different than what he's done before. We took the kids to a restaurant (ok, it was Culvers) and he actually ate about half of a chicken tender and 2/3 of a dish of vanilla frozen custard. And sat still at the table f or more than 10 minutes in doing so. This is what progress looks like around here! He's also said that he wants to learn how to take pills and to stop doing formula. One goal at a time.
After bath one night this week, Lemon explained to Lime he wears a tube at night because he has cystic fibrosis, so he is becoming at least vaguely aware of the idea that not everyone is like him. His tone when explaining it was more along the lines of "I have an amazing superpower that you don't have that lets me wear this tube and you can't have one," so I don't think he quite knows what it all means yet, but I suppose it's better to start this journey from a positive place.
One interesting tidbit that I'll just put out here for any fellow CF parents who are reading along is that we got back another batch of lab results for Lemon, this one on his vitamin levels (people with CF have a hard time absorbing fat-soluble vitamins). Interestingly, his A and E levels were in the high end of the normal range, but his D level was at the low end of normal, even though there is vitamin D in the special CF vitamins that he takes (the same one that gives him all his A and E), and we also give him extra vitamin D on top of that. We've been giving the extra D by using concentrated vitamin D drops that we add to his formula. One of the nutritionists told us that for reasons that no one seems to understand, vitamin D and tubes seem to be a bad combination. They think, although there's no proof, that vitamin D sticks to the insides of the plastic tubing rather than going into the person's belly, so giving it through the tube is ineffective. So, now we're supposed to switch over to doing that orally. It sounds like no big deal but it means readjusting one piece of our already complicated daily routine. We'll get there.
Speaking of adjustments to our routine, here's a good way to drive a patient or caregiver insane if you are a pharmacist. Say the patient has a one-week supply of a medication left, and asks for a refill of the medication. Give them one month's worth, divided into one small bottle with a week's worth of medication, and a large one with the remaining 3 weeks. Then tell them that the small bottle actually contains medicine that will expire in a week, so they should use the small bottle first, then finish up the one-week supply that they already had at their house, and then proceed with the next 3 weeks of the refill. Why not? It's not like patients and caregivers have anything else to think about...
