Week 218: The scamper

I am pleased to report that somehow, we survived a week without Papa Bear. By somehow, I mainly mean that I did nothing but work and take care of the kids and went to bed at 8:30 every night. I may also have eaten cereal for dinner every night, it's kind of a blur at this point. But, every treatment got done, every diaper got changed, and the trash got taken out. So, victory.

We did do one extra fun thing this week, just to keep things interesting. As long-time readers will

recall, we originally had two cats, Daphne and Denzel. Sadly, Denzel passed away about 18 months ago, and my life has just not been complete without an orange boy cat in it. For whatever reason (sleep deprivation?) I thought that this would be a good time to bring a couple of little scamps into our household, so on Wednesday I picked up two little rescue kittens to come join the circus here in our house. The kids and Papa Bear had picked out the name Donut for one of the cats, so naturally I decided the other one (my sweet orange boy) should be named Duncan. They are pure joy. And Lemon is so in love with them. I suspect they will grow up to be VERY tolerant cats, since he will, without warning, scoop them up by their mid-sections and tote them around, put them down his little slide, have them "jump" on his trampoline. Daphne is still getting used to the idea that there are some new residents in the house, but I imagine she'll come around eventually. She did eventually accept the kids, after all!

In other news, some of you may remember that a while ago I finally managed to worm my way into the Cystic Fibrosis Foundation to do some medical writing for them. I'm very pleased to announce that some of my content has now made it onto their website. Feeling the need to brush up on some basics about the CFTR protein? Maybe you're interested the different types of CFTR mutations? How about CFTR modulators? Check out these all-new sections of CFF's website. I'm glad to say that the Foundation has asked me to keep going and develop some content for them about "New Frontiers in CF Research," so watch this space.








On the health front, we are done with two weeks of Cayston. If you had asked me a couple of days ago, I would have told you that we would be stopping Cayston after 2 weeks, because Lemon seemed really well. Unfortunately, Lemon, Lime, and I all caught some other new cold, hard on the heels of whatever the kids had before. So, Lemon is once again coughing up a storm. I'm quite convinced that it's just the new virus and not anything bacterial, but it seems pretty dumb to take him off the antibiotic when he's actively sick. After making up a little bit of precious ground in the past week, we're once again cutting back on tube feeds, dealing with puking, etc. This does make me feel better about all the boluses I pumped into him last week when he was well, though--we need those precious ounces of body fat to help him fight off this new cold, and hopefully we'll only get pushed back to where we started from, weight-wise, and not further into the hole.

We did cross an important milestone this week: it has now been one full year since Lemon was discharged from his most recent hospitalization. We are definitely in a stronger position than we were a year a go, and we've learned some important lessons about managing Lemon's health that have helped us to achieve our hospital-free year. I think the key lessons for us have been the importance of nutrition, hydration, and inhaled antibiotics. A year ago, we were so focused on the respiratory symptoms whenever Lemon got sick, and were not as attuned to the nutrition/hydration angle. Last year's hospitalization really showed us what a difference even just staying hydrated during an illness can make for him. We also got away from our long-standing intervention plan of oral antibiotics, in favor of inhaled. I won't lie, inhaled antibiotics are a pain. Three treatments a day gets old for everyone really fast. I long for the simplicity of shoving a few mL of a liquid medicine through a G-tube twice a day. But, much as I long for it, that plan never worked for us. And if inhaled antibiotics ever seem like a big deal, I just remind myself what doing home IV's is like, and then I remember that inhaled isn't so bad. Whatever this winter brings, we are more prepared to face it than ever before, and this hospital-free year is an accomplishment that we can all be proud of.