Week 227: Gifts

We got the gift of some great news this week, after spending nearly 4 hours at our quarterly clinic visit, enhanced by pulmonary function tests, chest x-ray, and a blood draw. Thanks to all the various poking and prodding, we now know that Lemon is 1.5cm taller than he was 3 months ago, that his chest x-ray looked clear, and that he did really well on the pulmonary function test/ His iron levels are good, and most amazingly, his liver enzymes are normal. For the first time since we've been measuring them. I could hardly believe it. We've had a wonderful holiday visit with Grandma and Grandpa, and the boys have gotten so many nice things from so many generous people. But, nothing for me will top seeing so many normal test results come in at once. I hope all of you had a wonderful time celebrating whatever you celebrate, and that the coming year brings you abundant happiness and good health. See you in 2018!

Week 226: Stretch and toss

On the week of a clinic visit, I always try to put together in my mind what has happened in the 3 months since we were last seen, and try to figure out what parts of our plan need to be optimized going forward. I needn't remind most of you that the past 3 months have been a fairly unrelenting series of respiratory infections of various types and degrees of severity. Still, I feel like in spite of all that, our respiratory plan is working. We have fought off all but two of those things without any antibiotics at all, and the two times that we felt like we did need to use an antibiotic, we had Cayston on hand, deployed it, and beat things back to baseline. We've just finished a week on Cayston now and Lemon is back to respiratory baseline already, so I'm pretty sure we can stop after 2 weeks, or maybe after 10 days if our care team agrees.





If I have learned anything over 4.5 years of being a CF mama, it's that if it's not respiratory, it's nutrition. That is indeed the case now--Lemon is currently lighter than he was in June, and also taller--I'll be curious to see by how much, but I can see his ankles sticking out of the new pants I bought him for school this fall. When weight goes down and height goes up, BMI goes in the toilet, and I can see it written all over his body, every rib, every vertebra, every muscle in his back clearly visible. He's not unhealthily skinny (yet, I think), but he is definitely very thin. Thin would be OK if I didn't have this suspicion that our reserves would be called upon many more time this winter, and we don't have any right now.





















So, what am I hoping to get out of this clinic visit? Well, we will get a lot of data. It's our big annual recheck of everything, which means not just the regular two-hour song and dance, but also pulmonary function tests, chest x-ray, and a blood draw. I am curious to see how Lemon's lungs are doing in light of all they've been through so far this winter, although I doubt either the PFTs or the x-rays will tell us much, because Lemon isn't reliable enough at doing the PFTs yet for the data to be really valid, and an x-ray is not exactly a highly sensitive measure of how lungs are doing. I will also be very curious to see how his liver numbers are after 3 months on ursodiol--hopefully it's working and his numbers will be within the normal range, or at least closer to it. We'll also get a vitamin D level to see if he's taking enough vitamins, and some iron measures to see if the amount we're supplementing is the right amount

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I'm also hoping to continue to get some new ideas from our nutritionist on how to add calories to Lemon's formula so we can get some weight back on him. I've given up all short-term hope of Lemon actually eating enough calories to have any kind of impact on his weight. With his BMI continuing to drop, I basically just want to ram as many calories as is feasible through the tube to get some weight on him over the next couple of weeks, when he'll be home from school and away from the 18 pathogen-carrying monsters (ahem, I mean his friends) in his class. We're continuing with food school for now. I had thought about pulling the plug after today's session, because Lemon had really started to resist going. I mentioned that to his therapist, and she said that she wasn't at all surprised, that she's been pushing his abilities by offering increasingly challenging foods. And Lemon being Lemon, he doesn't want to do things he's not good at so he'd rather just not go. She still thinks he's making progress, so we'll keep at it for a while longer and see where we can get.

Assuming we survive the clinic visit, we're all looking forward to the upcoming holidays. This is the first year Lemon has been old enough to really anticipate the holidays (well, mainly all his presents). Lime still doesn't quite get the idea of presents yet, but he loves all the lights and decorations. And he still can't quite say the "k" sound (usually substituting "t"), so his pronunciation of "Christmas" cracks me up every time. Don't worry, I'm still a committed Scrooge at heart, but I do appreciate seeing the magic of the holiday season through the kids eyes.

Week 225: Troughs

Thus far, our fall and winter has been kind of like the experience of being on a small boat at sea. You get buffeted by a wave, then the wave disappears. Is it calm, or is it a trough between waves? Trough. Another wave comes and goes. Calm? Nope, another trough. Another wave, calm again. Or so it seems. Trough after all. Having played a few rounds, I'm pretty confident that the answer is pretty much always trough. Some troughs may be wider than others, just to kind of mix it up, but they are all troughs in the end.










Some may say that I jinxed our last pseudo-calm by noting how calm it was. Not so. In fact, at the time that I wrote last week's post, Lime was already beginning to cough and sneeze as a result of cold #307 that was about to make its way through our family. But, I wanted to dwell for a little while longer on that flat stretch of water. As it turns out, #307 was quite a doozy. Lime was perky enough on Tuesday morning, so I brought him to school as usual. When I picked him up, though, he was in a sorry state of affairs and his teacher said to me, "Maybe not tomorrow." So, I arranged for our former nanny to come and watch him on Wednesday morning. Of course, by Tuesday night, Lemon was coughing too, and since I had childcare arranged at home anyhow I let him stay home, too. I might point out this is the first day of school he has missed this year--quite an achievement on his part.






On Thursday, both guys were feeling pretty lousy so I kept them both home again, but on Friday they both seemed quite improved so back to school they went. Lime continued to recover, whereas Lemon's recovery sort of stalled, and he continued to look really pale. I mean even paler than usual. In spite of his color and the cough he seemed sprightly enough until yesterday morning, when the cough took a marked turn for the worse--with Lime's cough almost completely gone, Lemon's was suddenly big, wet, and productive. I did not like the sound of that at all, and Papa Bear and I agreed immediately that it was time to start Cayston again. That was definitely the right call, because 24 hours in to the course of Cayston, Lemon's cough has nearly dried up and he seems to be feeling quite a bit better. Hopefully this means we can get away with just doing 2 weeks this time.

Maybe we'll get lucky and the Cayston will help keep him healthy enough for long enough that he'll put some weight on over the next 10 days. We have our big end-of-year clinic visit coming up on the 20th and I'd really rather not bring him in with his spine and all his ribs sticking out through his skin like they are now. His appearance doesn't really tell the full story of how hard we have been trying to keep up with nutrition this winter.





For the past couple of months I've been wanting to teach Lemon to swallow pills, since everyone has been getting pretty tired of the whole enzymes with applesauce show. But, with all the puking there hasn't been a good opportunity--the last thing I want is for him to draw a connection between that and swallowing pills. He also hasn't seemed that interested, in spite of not wanting to do the applesauce anymore. But, this evening, he spontaneously mentioned to me that he wants to learn to take pills whole. So, that seems hopeful, and will give us something fun to work on over the holidays. Don't worry, in addition to learning pill swallowing, Grandma and Grandpa are coming to visit and we are going to a water park, so there will be some more traditional fun as well!

Week 224: Zippy

Every now and again, maybe about 2 weeks out of every 52 it seems, we get a week where nothing much happens. And man are those the best weeks ever. Lemon and Lime both recovered from the cold they had over Thanksgiving and stayed well for the last 10 days or so. It's amazing what 10 days of good health will do for a couple of boys. By that I mean that their energy level is such that Papa Bear and I have serious concerns as to whether our house and worldly possessions will survive the onslaught. One afternoon this week when Lemon was being particularly "energetic," we at first wondered if something was wrong. It turns out, actually, that something was right--it had been a week or so since he'd last vomited, so he was finally feeling caught up on sleep and nutrition and boy did it show.

I'm glad Lemon was full of pep for his week as "child of the week" in his class at school. He got to wear a crown every day, and have a poster with pictures of his family hung in the classroom. On Wednesday, I went in and did a science demonstration for the kids, layering corn syrup, water, and olive oil in a drinking glass. I think it went well, although thus far Lemon has declined to recount the experience for anyone. After some prodding he is willing to concede that I was in his classroom, but that is about it.

Papa Bear was out of town for a couple of days this week, so at the kids' request I took them on a drive "at night time" (ie 4:45pm) to see the holiday lights around our neighborhood. Since they almost never leave the house when it's dark, this was a profoundly thrilling experience, which we topped off by picking up some take-out food from a restaurant, another cause for high excitement. I couldn't get any traction with Lemon on the chicken satay that I got for him, but weirdly he adored the cucumber salad that came with it. In other news, his relationship with food continues to mystify everyone.

Lime appears to be going through some sort of growth spurt, and I've temporarily conceded the point that he may take a sippy cup of milk to bed with him. The old me would have not been in favor of this idea at all. The new me, on the other hand, recognizes the inherent benefit implied by not getting up to pour a glass of milk at 3 a.m. He's almost up to 25 lb, so who knows, may be by his 30 month check-up in January he will have clawed his way out of the 4th percentile for weight. His little personality is getting more assertive by the day, and he and his brother seem to always want to be together, even when they struggle to maintain domestic harmony. But, being alone is boring. The cats agree!