Monday, October 16, 2017

Week 217: Off to the races

Full speed ahead as always around here. On Monday night, within just a couple of hours of my posting the blog, Lemon's cough took a marked turn for the worse, so we decided we had no choice but to start Cayston on Tuesday morning. It was definitely the right call, since he started perking up almost immediately, and I'm hoping that we'll be able to get away with a two-week course instead of a month (knock on wood). Fitting in 3 treatments a day with school and work and everything else is challenging to say the least. It will definitely be a relief for everyone to get back to twice a day.
On Friday, Lemon had his follow-up with the gastroenterologist to talk about his liver. The first thing we learned at that appointment is that Lemon has lost a pound and a half relative to his weight in JUNE. That's 4 months of not gaining a thing and instead losing ground. Partly because of when we tried cutting back on tube feeds when we began food school, and partly from him being at least somewhat sick pretty much non-stop since school started, which forces us to keep the overnight feed volumes low. Now that we have this latest cold more or less under control, we are in full-court-press mode to try and get weight back on. That means 3.5 cartons of formula at night plus 100mL bolus feeds morning and night. It's a lot of formula, syringes, and fuss, but we've got to make up some ground while we can, since winter hasn't even started yet.

The next thing we learned from the GI doc was that he wanted us to start on a new medication, usrodiol, that may slow down or prevent damage to Lemon's liver. We started the ursodiol today, and we'll re-run the liver panel when we do his annual labs in December to see if it's having any effect. It better be, because a one month supply costs us $90 out of pocket (for a generic medication!). 

When we got back from the appointment, I dashed over to our local Enterprise and picked up a rental car, and on Saturday morning I drove down to Des Moines, where I met up with an old buddy from Boston. We bummed around Des Moines on Saturday afternoon and were very favorably impressed by it. On Sunday, we ran the Des Moines marathon together, capping off the 2017 running season with a personal best for me, 4:05. I didn't quite manage to break the 4:00 barrier this time around, but I think it was by far the strongest marathon I've ever run, and I have high hopes for the 2018 season. In the mean time, I'm looking forward to the off season, where I can run a little less and spend a little more time on other pursuits. Many thanks to Papa Bear, Nona, and the rest of our crew for taking such good care of the maniacs while I was away!
I'll definitely kick off the off-season in style this week, because no sooner did I return from Des Moines this morning then Papa Bear took off for a week in Greece for a conference and some sight-seeing. I'm sure I'll be doing plenty of running around over the next week, although most of it will be chasing after the dream team, rather than endless laps of the neighborhoods of Madison!

Monday, October 9, 2017

Week 216: Mountain high

This week, I briefly escaped the midwest for a work trip to Denver. You will all be pleased to know (not that I had any doubt) that the boys managed to survive on their own without me for a few days. Papa Bear did an admirable job holding down the fort by himself, including carrying out 3 treatments a day for Lemon, who (along with Lime) has had quite a cough for the past 10 days or so. I, meanwhile, had two of the most amazing nights of sleep that I've had within recent memory, waking up not at all during the night and sleeping until the deluxe hour of 5 a.m. mountain time (aka 6 a.m. central time) every morning. I think some work was done as well, but I mainly remember those nights of sleep. Amazing stuff, I tell you.









We have been going back and forth all week about whether to start Lemon on a round of Cayston. He has had this pretty terrible sounding productive cough for over a week, after all--a fresh cold of some kind after he kicked the first cold of the school year so well. Fortunately, we have Lime to serve as our canary in the coal mine. Our thinking is that if Lime is also still coughing, and if both of them still seem relatively perky, there is no reason to leap to the conclusion that there is something bacterial going on in Lemon's lungs. So far, we haven't seen any of the other signs (puking, fever, very low energy) that we typically see when Lemon needs a round of antibiotics, and we're continuing to wait. It seemed like both kids went through the worst of it a couple of days ago, and have both been getting incrementally better the last 48 hours or so. Fingers crossed. We could really use a break from all these colds to work on some weight gain!

Progress with eating continues to be, shall we say, mixed. Lemon's therapist at food school continues to be very enthusiastic about his progress, which I suppose is her job. I have to say that we are not seeing overwhelming progress. I think we are in a marginally better position than we were at the beginning of the summer. But, we're still not anywhere close to my seemingly conservative goal of getting Lemon to eat say 200 calories a day by mouth. Today, I asked the therapist what she thought of one of our other goals, which is getting Lemon to swallow pills. I caught what I believe is called a "microexpression" that rushed across her face before she composed herself and said something about how that was an interesting idea. I think we're going to try anyway. I had been holding back because I was hoping that Lemon would make real inroads on learning how to eat, but I feel like as long as we're going to sit in a plateau with regard to that skill, maybe he could at least try to learn a different oral skill in  the meantime. The nutritionist at our clinic was very supportive of the idea, and I think it would be helpful to Lemon (and to us!) in the long term, because he's started to fight us on taking his enzymes in applesauce, so we really need another approach.

All that aside, we had a fun time celebrating my birthday yesterday. Nona made some delicious cakes, and we went on our annual apple and pumpkin picking adventure. I also got a great birthday gift, a steam mop/vacuum. It probably says something about my advanced age (or the number of people in my house who throw/drop food on the floor every day, either preceded or followed by rolling in the sandbox and then running into the house) that this is one of the greatest birthday gifts ever. Thanks to everyone who sent birthday wishes from near and far, it was wonderful to hear from all of you!







Monday, October 2, 2017

Week 215: In the cold

It is so hard to sit down and write a blog post on a night like this, when, to top off all the other various crises that are going on in the world right now, a horrific mass shooting has taken place in Las Vegas. The infinitesimally small daily struggles of our household barely feel worth writing about. Honestly, they become hard for me to concentrate on, never mind all of you out there on the internet who aren't daily participants in these little dramas. And yet, despite the demands on my attention from the outside world, I know that I can't take my eye off the ball here even for a moment, because the nature of CF is such that if you coast for even a day, you will pay the price. So, I once again acknowledge that I am writing this blog as a reasonably well-informed citizen of our country and of the world, but that I will remain true to its focus on the life of one family living with CF.







We had a clinic visit on Wednesday, which went well all things considered. Lemon did very well with his pulmonary function tests. He was able to produce consistent results this time, and was much better at controlling his breath as he blew into the machine. He just needs to figure out how to breathe out for longer, and then we will be able to get some real numbers on how his lungs are doing. Of course, the fact that we have to go to the pulmonary lab at the beginning of every visit just makes these check-ups even longer. I had to suppress a laugh when our nurse practitioner (who we didn't even see until we'd been in the clinic for over two hours) told us that our _next_ visit is going to be "epic" because at that one we'll have to do a chest x-ray and a blood draw also. Trust me, two hours in an exam room with Lemon is already a fairly epic experience.





We are still struggling with weight gain. We'd backed down on tube feeding over the summer in order to give Lemon space to be hungry, to maximize the chances that food school would actually get him to start eating things by mouth. Instead he lost weight, so eventually in late July or early August we decided to go back up to his usual tube feeding volume. Then school started and he got a cold, so we had to back down on the volume again to avoid all the vomiting. Then he managed to get over that cold without any antibiotics (!!!!) so we went back up on the volume. That got us to Wednesday, where we'd managed to get his weight back up to just under where he was in June. Then, of course, having been well for a week or so, both kids came down with a second cold, so now we're back down on volume again. Sigh.






On the plus side, we once again have a working refrigerator, which feels like nothing short of a miracle. Lemon is fairly obsessed with the fact that water and ice come out of the front of it. And, one has to imagine that some day, somehow, he will become as interested in its contents as his younger brother is.

I'm leaving on a quick trip to Denver tomorrow morning, so we shall see how the males of the household do for 72 hours unsupervised. Dominoes Pizza may be called upon. Luckily Lime is now sleeping as late as 4:45 on a regular basis, so Papa Bear should be just fine. By which I mean, send coffee and forgive him if he seems sort of dazed. He should be back to normal operating parameters again by Monday I would think.

Monday, September 25, 2017

Week 214: Conked out

I should have known better than to title last week's post "The unexpected." It just invites things. I suppose I could just as well have entitled this week's post "The foreshadowed," but my maternal grandmother was particularly partial to the phrase "conked out," and it's equally fitting.

So, here's the foreshadowing. Anyone who knows Lime well knows that one of the great sources of joy in his little life is the consumption of an afternoon Popsicle or three while sitting on the chairs in our front yard, watching various vehicles roll by our house. Because of his inordinate fondness for Popsicles, we noticed a disquieting trend. On some days, the Popsicles were not adequately frozen. At first, we attributed this to the fact that there are lots of people in and out of our house every day, some of whom may not be fastidious about closing the refrigerator and freezer. This list may include Lime himself, who will, in a desperate attempt to reach his Popsicles, pull back on the freezer door with such vigor and abandon that he ends up falling over backwards.

But, as the week wore on, it became increasingly clear that some more sinister force was at work. We reluctantly came to the conclusion that our refrigerator had, in my grandmother's words, conked out. This was of particular concern because at any given time, our refrigerator contains a value equivalent to several refrigerators' worth of prescription medication. So, one evening when the temperature in the cabinet had reach 48F and showed no signs of going back down, I called our reliable hero, Nona, who came over to pick up our stock of medications and perishable foods.  Just in the nick of time, too, as that evening marked the last 24 hours of our refrigerator's useful life.







I then spent a great deal of time on the internet, reading reviews, checking and re-checking measurements, searching for sales, performing comparisons to see which vendor could get us a new unit the most quickly, and so forth. In summary, we are living out of a cooler packed with ice on the kitchen floor, but with any luck on Thursday we will be back up and running with a new refrigerator that has the bonus feature of actually staying cold.

All this shenanigans has occupied what little remained of my available brain cells. In fact, I've been so distracted by the whole thing that I completely forgot to take Lemon to food school this afternoon. He has a clinic visit coming up on Wednesday, so I'd been devoting my mental energy towards not forgetting that, and making sure I was writing down all the questions I want to ask at the visit. And thus, food school fell through the cracks. There is now a weekly reminder set on my phone, and I am really hoping to have those neural pathways back starting next week.









I feel a little silly writing this whole post about a malfunctioning refrigerator right now. Yes, it's a pain, yes, it's disruptive, yes, it's money we weren't planning on spending in this way and at this time. But on the other hand, we are so fortunate that that is all it is. Unlike our fellow Americans in Puerto Rico, we have power, we have a functioning infrastructure, we can get ice, we can get more food, we can get more medicine, and we can get a new refrigerator. So, please consider sending a few bucks their way. There are a number of organizations, like this one, that are helping out there with relief efforts that could use your assistance. And hey, since tomorrow is a day ending in "y," maybe pick up the phone and let your senator know that you like having access to healthcare. Couldn't hurt.


Monday, September 18, 2017

Week 213: The unexpected

Parenting keeps you on your toes, no doubt about that. Just when you think you have something figured out or know what to expect, you discover that you were, in fact, wrong. Take, for example, what I had always imagined would be true about sleeping. I had a notion that I would perhaps not sleep ideally well while pregnant. I had also heard repeatedly that infants do not sleep at convenient times. And I had heard that sleeping through the night was not an event, but rather a process, and that the process would be considered to be well under way when the child performed the miraculous feat of sleeping from 11pm until 5am. But, in all the things I'd heard about sleeping, I did not hear messages about not sleeping when a child was say 2 years old. Or 4 years old for that matter. Perhaps the people who preceded me into parenthood realized that the survival of the species was contingent on them remaining silent on these points.



Well, I am now sufficiently sleep deprived to let you in on a secret from the land of having a two year old and a four year old: I have not slept until (not past; UNTIL) 5 a.m. more than 5 times since June. And it is starting to take its toll. To a very large extent, this state of affairs has been driven by Lime and his accursed molars, two of which remain lost but not forgotten somewhere in his upper jaw. He is gnawing and drooling as though his life depends on it, and still no teeth. These past few days, though, Lemon has realized that now there are things happening in our house at 4am, and being loathe to miss out on any action, has decided that he too must take part. I'm glad I have so many of the kids' favorite books memorized, as that makes it much easier to read them with my eyes closed...





Through all the exhaustion, though, the kids still find ways to make it worth it. For instance, today at food school, Lemon had a semi-accident (made it to the bathroom, but not quite soon enough or with enough control). So, when we got home, he had to change clothes. He's been able to get out of his own bottoms for a long time, but still kind of struggles with shirts. So, he slipped off the wet bottoms, refused my help with the shirt, and then, with the shirt off of his body but still stuck around his head like a turban, and without a trace of irony, he announced "See how grown up I am now?"

So, yes, my love is unconditional. I still find that whole scenario hilarious. But, just in case the kids are reading the blog, I will also emphasize that my love would still be unconditional, and I would still find them hilarious, if they slept until the decadently late hour of say 5:30. Also, I do not hesitate to point out that if they keep up their current routine after the clocks fall back an hour, they will have to start sleeping in the garage.

Monday, September 11, 2017

Week 212: On its head

To everyone's amazement, we made it through the first week of school. A big success from our first week is our new morning babysitter, who has rapidly become a favorite of the kids, taking them on all sorts of adventures in the wilds of our neighborhood before school. Predictably, this leads to some reluctance to actually leave for school, but we're working on that.

The first day of school for both kids was Wednesday. Somewhat to my surprise, Lemon was really hesitant to be dropped off, despite never having had a single difficult drop-off last year. He's been a little teary and clingy every morning so far. I was worried that Lime would actually be the harder one to drop off, being more of a Mama's boy by disposition than Lemon ever was.  And yet, on the first day, he saw his classroom, recognized it from orientation on the day before, and walked right in, leaving me standing in the hall in shock. And so it's been every morning since. I hear this is a common "second child" phenomenon, but whatever it is, I'll take it! At the end of the day, it's a bit of the reverse--Lime is exhausted and eager to come home, whereas Lemon, having found his footing, is having too much fun with his friends to leave.

Of course, every CF parent's big concern in the fall is the return to a classroom fill of disease-riddled vermin (ahem, I mean fellow scholars). We are apparently getting the school year off to a flying start, with both kids having come down with a cold after just 3 school days. Lemon was very sad on Saturday, full of congestion and general woe, but his spirits were better on Sunday and today, although he is of course coughing up a storm. We've gone up on PT and down on tube feeds in an attempt to maintain some sort of equilibrium and hopefully avoid a round of Cayston. Although, we haven't done any antibiotics at all since May, which is a great stretch for us.

At least this early cold has given us a good test case for how we will fit in 3 sessions of PT with our new weekday schedule. The answer, at least based on today's experience, is barely, but I think it's doable. Mondays are especially tricky because we now have "food school" on Mondays at 1, so fitting in PT between getting home from regular school at 12 and leaving for food school at 12:45 is tight, to say the least. It does seem like we are making progress at food school, though, so I'm committed to stick with it at least through the fall, with the hopes that maybe we could "graduate" in December (which is conveniently around the time that we will have completed the 20 visits that our insurance agreed to cover).


 I'm sure in another few weeks this schedule will feel normal and I will have forgotten about all previous schedules, but for the moment it really does feel like we turned our entire household on its head. Lemon decided to take this to a very literal level over the weekend by tripping on the sidewalk and somehow managing to land mostly on his nose and the left-hand side of his face by his eye, such that everyone I've seen with him today has been asking me what happened. At least at this point I'm used to accounting for a child with obvious facial injuries. With any luck, in the coming weeks the schedule will settle down, the cold will go away (please!!!), the scrapes will heal over, and we'll be on our way into fall.



Monday, September 4, 2017

Week 211: Laborious

The summer has drawn to a close. We are about to completely upend what has been one of our more stable child-care arrangements and embark on something completely different. On Friday, we said goodbye to Rose, our morning nanny who has been with us for over a year. Tomorrow, we say good morning to Robert, a life guard and swim instructor who will be running the kids ragged between 7-8:30 every morning so that I can get a jump-start on my work day. Starting on Wednesday, I will then load both kids into either the bike trailer or the car, and take them BOTH to school. Five days a week. Amazing. We thought this day would never come, and now it is here. Of course, they're still just going to school in the mornings, so at 11:45 I will load both of them back into the conveyance of choice and return them home to our new afternoon nanny, Irma. And this is how we plan to survive the next 9 months.  It sounds sort of complicated even to me as I write it, but then again we have been living with complex, multi-player childcare arrangements for 4 years now, so why not just keep going.

Thanks to Lemon's belief that the scale in the master bathroom is a very exciting thing to stand on, I can report that his weight has continued to climb back up since we resumed the higher volume night-time feeds. He's even been eating more by mouth this past week (including a remarkable 75 bites of food at food school on Tuesday!) so I have some vague hope that perhaps the food school is helping and we are making progress.  Or it could be a random uptick like we see from time to time, it's impossible to tell at this stage, but here's hoping he keeps it up. I feel like my main goal at this point is to get to a place were he is eating about say 300-500 calories per day by mouth. That would be huge, because if he could do that we could eliminate the morning bolus tube feeding, which no one likes terribly much.


I should have known better than to mention Lime's new predilection for sleeping past 5 a.m. in writing. No sooner did I do so than he woke up at 4:30 for a few days running. And then, another molar emerged. So the two bottom ones are in. I thought then I might get a break, and I did, one glorious morning of 5:15. And then back to 4:30 today, so maybe those top two are going to come in now and then we can be done with this. I have to imagine (hope) that once he starts school he will be so tired in the evenings that he may sleep a bit later in spite of himself.

In honor of the new school year, we also attempted to take a new family portrait, because the kids' school asks that we send one in for them to hang up on a wall with the other families. As with last year, we achieved "mixed" results. By which I mean this was about the best we could do. All of us are present, are looking at the camera, and have our eyes open. That is what counts as a victory around here. 4K and 2-year-old preschool, here we come!







Monday, August 28, 2017

Week 210: Liver, molar, sailor, spy

Amazingly enough, as soon as I finally wrote about Lime waking up at 4 a.m. consistently, he stopped doing it. And, the likely cause literally emerged, namely a new molar. Of course, that means that there are three more molars still lurking in various places in those cute little jaws. But I try not to dwell on that. Right now, I just luxuriate in the concept of sleeping in until 5:15. It is amazing what a difference it makes for one's general outlook on life to have the first digit on the clock be a 5 when waking up.

We also had Lemon's 4 year check-up with the regular pediatrician. He has grown another 6/10ths of an inch just since June, bringing him up to the 77th percentile in height. As I had expected based on our home scale, he'd lost some weight, although thanks to our bringing his tube feeds back up to 3.5 cans a night he's only down 6 oz on the summer. The fact that a 6 oz weight loss is even something you discuss at a pediatrician appointment kills me, but discuss it we did, and of course we'll be seen at the CF clinic next month anyhow for another weigh-in, and by then I imagine we'll have made up all the ground that we lost over the summer, weight-wise. Where this will put us in our quest to have Lemon consume more than 100 calories per day by mouth, who knows.

After the visit with the pediatrician, we went down to the lab to have blood drawn for yet another set of liver enzymes, and what do you know, still high, just like they have been every time Lemon's ever had them measured. So, the pediatrician scheduled us for a liver ultrasound and recommended a follow-up with GI. I took Lemon to the ultrasound this morning (one advantage of his current attitude about food: could care less about being allowed nothing by mouth after midnight). He was pretty apprehensive about getting on the table, even though we'd talked about the ultrasound a lot in the days prior. But once he got up on the table and discovered that it was true that the technician was just going to put goop on his belly and press on him with a wand, he was perfectly content to watch the cartoons they were showing on a TV while lying completely inert. So, they got very good images. Of course, the technician can't tell you what the images mean, you have to wait for a doctor to officially interpret them.

So, when we got home, I called the hospital to schedule the GI consult. The CF clinic had recommended a particular person, so I asked for him, and was told his next available was October 13. That seemed like sort of a long time to wait for the results of an ultrasound, so I asked about the first available generally, and it turns out that was October as well. So I went with the guy the CF clinic recommended, but I was kind of annoyed that we would have to potentially wait 6 weeks to find out the ultrasound results.

But, I should have known better. Our pediatrician has turned out to be the unexpected hero of our story several times, including this one--where he once again called me personally at the end of his work day to let me know that the results of the ultrasound were completely normal. He wants us to keep the GI consult just to get another opinion on the situation (since those liver tests are still high), but at least there doesn't appear to be anything structurally wrong. Phew! Now we can just focus on the important business of enjoying our last week of summer before school starts next week.

On another note--as I write this, Hurricane Harvey is continuing to dump more rain onto the Houston area, and there are thousands of families who instead of worrying about the last week of summer and the start of school are wondering if they will ever go back to their homes again, or where they will sleep tonight. So, although I usually restrict my fundraising efforts on this blog to the CF Foundation (still a worthy cause!), please consider throwing a few bucks towards your favorite charity that is working to help families in Texas--they need all the help they can get.




Monday, August 21, 2017

Week 209: Four-four time

Well, loyal readers, the fourth year of Lemon's life is in the books, and what a year it was. We capped
it off with a great party at our house, featuring a Slip'n'Slide that was a huge hit. As were the truck-shaped candles on the birthday cake, which were apparently good enough to fight over. Also, there were mimosas, so no one cared much about the fighting. When I think about everything it has taken to get us to this milestone, it is amazing that we made it, and I am so grateful for the medicine, the people, and the support, that have enabled us to achieve it. Perhaps the thing I'm most grateful for is that all of this has enabled Lemon to be largely oblivious to what a miracle it is that he has made it to four. As far as he is concerned, he's just four, of course he is, five is next, and if possible he would like more remote controlled vehicles for his next birthday, to add to the ones he would like to get for Christmas. 

We also had a nice celebration of Nona's birthday, which is the day after Lemon's. Thanks to some careful planning (ie, not sitting down to dinner until the kids were asleep), we even managed to enjoy a civilized meal, a celebration befitting the person who has essentially made our lives possible the last four years. 

The number four has cropped up in our lives this week in some other, less miraculous ways. One of the ways is Lime's current sleep schedule, which involves waking up at 4 (or, sometimes, 4:30). Every day. For the last two months. I am an endurance athlete, but this is starting to push my limits. I feel that one of the perks of adulthood should be getting to stay awake past sun-down, even in the summer. And also not waking up when even the two-year-old acknowledges that it is "ni-time" and "dar(k)." Of course, then he will detect the presence of his best pal, Daphne the cat, who usually appears when she hears me stumbling around into the kitchen, blindly attempting to fill a cup with milk. Since Lime can't say the letter "k" yet, for a long time he called the cat "chee-chee" (kitty). Now, in an appellation that more befits her dignity, he's advanced to "chee-tah!" (kitty-cat). Something about a two-year-old delightedly screeching "Cheetah!" at a sleepy house cat at 4 a.m. cracks me up every time. By 4:06, though, I'm ready to go back to bed.


The other tale of four is that we are now up to four, yes four, separate pharmacies for Lemon. We of course had standard CVS, which handles all but one of his prescriptions. Then we had CVS Specialty Pharmacy, which handled the last one. Then we had the home pharmacy that handles all his feeding tube supplies and formula. Well, that was an insufficiently complex arrangement, it would seem. The home pharmacy decided to switch the type of feeding tube that they supply. Fair enough, the new ones do seem to be a better design in that the new feeding tube has a little threaded bit at the end that actually screws onto the tube coming from the bag with all the formula in it, so it won't magically disconnect during the night and flood the bed with formula. Fair enough.


The only little problem with the new feeding tubes is that because they have the little threaded bit on the end, you can't use them with a standard syringe anymore. You now need a syringe that has a little threaded bit on the end to match. And, of course, the home pharmacy can supply us with the 60mL syringes with the little threaded bit on the end, because those are part of tube feeding. But the dozen or so smaller syringes that we use every day to deliver medicine and flush the tube with water and whatnot? Well, those are not part of tube feeding, so the home pharmacy can't provide them. Oh, and of course, by the way, CVS doesn't carry them either, because that would be too convenient. No, no, you need to get them from the pharmacy at the children's hospital, and you need a separate prescription for them, and you can only get four syringes per medication per month, and you can't set them up to auto-refill, although they will call you every month to see if you want to refill the prescription.  

This is the kind of insanity that really pushes people managing a chronic illness over the edge. It doesn't sound tremendously bad, but when you're already juggling about as many balls as you can and are in fact already dropping a ball or two on a semi-regular basis, adding one more to the mix is supremely unhelpful. Why is it that neither the pharmacy that does the feeding supplies, nor the pharmacy that does the medicine, is capable of supplying the spiffy new syringes? Seriously.

Anyhow, that concludes my tale of four. We managed to catch some nice glimpses of an 85% eclipse on a 100% overcast day. Lemon got a big kick out of the eclipse glasses and talking about the sun going in front of the moon. We're looking forward to making a trip to the totality zone in 2024, when the barriers to travel will hopefully be a little lower than they are now!



Monday, August 14, 2017

Week 208: Countdown to four


In just a few short days, the blog (and one of its stars) will be four years old. Four years worth of Mondays, of photos, of reflecting on the week and the month and the year gone by. I've enjoyed these last couple of months of relative respite from CF, with no major flare-ups or other struggles, just the daily routine which is a bit of a grind but it is a grind that we are used to, so we hardly notice it when things are "normal." I'm sure once school starts in a few weeks things will go off the hook again but I am hoping the last few weeks of August will give us enough time to be ready.










One thing that we need to do to get ready is to get some more weight on Lemon. We'd backed off on his overnight feeds, going down from 3.5 cartons a night to 3, so that he would (theoretically) be hungrier during the day. Maybe he is, it's hard to tell--is he eating 10 bites of food a day instead of 8? Is that an important difference? But, what's not hard to interpret is that he spontaneously hopped on our scale today and was almost a pound lighter than he was at the beginning of the summer--and that while holding an 8oz cup of water in his hand. I am still committed to the mission of getting him to eat more by mouth. But I'm also committed to the mission of putting him in the best possible position to begin the school year, health-wise, and I don't think I'm doing him any favors by bringing down his weight right now in the hopes that he'll eat an extra pretzel. So, tonight we went back up to 3.5 cartons and I think we'll hold there for a while, at least until we make up the ground we've lost. On the plus side, last week we found a clever way to do tube feeds in a hotel in the event that we forget to bring our travel IV pole.

Anyhow, now that we're back in the land of reliable wifi, here are many photos from our wonderful visit with Grandma and Grandpa.

Before we left, we said good bye to our lovely afternoon nanny, who we all already miss a lot. The new nanny seems to be fine, and she even survived this afternoon despite no naps from anybody...I guess I should wait to see whether she still shows up tomorrow before saying anything.





Some local highlights from Grandma and Grandpa's visit:







The sights around Lake Geneva (no pool photos, the combination of boys, water, and phones was deemed to hazardous to risk it...)