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!

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.

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!

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...)

Week 207: Jam-pa

We are on a mini get-away at the moment in Lake Geneva, WI at the same resort we came to last year. We're enjoying it just as much as last year, if not more, but one thing hasn't changed: terrible wifi. So, just words this week and I'll put up the photos next week when we're back in the land of Internet.

So, what happened this week...we had our visit with a different therapist at food school, the one who did Lemon's initial evaluation. I asked her before the appointment started to evaluate and see if she thought he'd made any progress since she first met him. She was actually really positive, and thought he had made some inroads. She also said that he was almost ready to start doing some food therapy related activities at home. She felt like it was definitely worth him continuing with the program in the fall. So, I sent in the form to reserve him a spot, and the only time they could offer me that made even vague sense (really vague) was 1pm on Mondays. So, I'm not exactly sure how this will actually integrate itself into our schedule, but I suppose we'll find a way to make it work. At this year Lemon's school let's out at 11:45, so it's only inconvenient for me, not him. And, I'd really like to get him in a good position for starting "real' school next fall, so no time like the present.

Lemon had his last day of camp on Friday (where is the summer going?), and that same evening, Grandma and Grandpa arrived from New York for their summer visit. We spent Saturday having fun in Madison, including a trip to the annual Mustard Festival. Then on Sunday we packed six people and an unspeakable amount of stuff into a minivan that we'd rented for the occasion and drove down here to Lake Geneva. 

In being here, we've discovered the best thing we've found yet in terms of getting Lemon to eat: swimming. We went to the pool twice today, and after each trip, Lemon ate more food than he might in 3 or 4 regular days. And some ice cream in between to boot. So, I think we'll be looking for somewhere to sign him up for swimming lessons when we get home. 

Lime is also having a blast. He started shrieking with joy when we first got to the pools. He particularly enjoyed a little boat tour we did on the lake today. It was one of the few times I was sorry that I don't wear a FitBit, because I would really like to know how many steps I took during that 1-hour ride. Up the stairs, down the stairs, bow, stern, port, starboard, we did it all, with me trying to keep a firm grip on him at all times in case he leaned too far over. He's quite taken with his grandparents, especially "Jam-Pa," although he does seem a little mystified by the sudden appearance of additional grandparents in his life. 

We're here in Lake Geneva for another couple of nights and then back in Madison for a few more relatively unstructured weeks before both kids (!!) start their school year. How is Lemon almost 4 already?

Week 206: Crib no more

For just under four years, someone in my house has been sleeping in a crib. Four years of waking up in the morning (or other various times of day/night) and looking through the slats at a little face. Four years of trying to figure out the least awkward way to put a sheet on a crib mattress. Four years of the distinct thunk that a toy truck makes when it falls exactly the distance from the surface of the crib mattress to a wood floor below. And then, no more.

On Saturday, I disassembled our crib for the last time, and finished putting together Lime's new "big boy" bed. He was excited about it in general, and only slightly apprehensive about it at bed time. The great revelation came the next morning, when he woke up. My general principle is that I do not get up with children before 5 a.m. You have to draw the line somewhere. So, up to this point, when Lime woke up before 5, which is pretty frequently, I would let him stay in the crib saying "Mama! Mama!" at period intervals until at least 5. Sunday morning, he began at 4:40 with one round of "Mama! Mama!" Then, 30 seconds of silence, a silence in which you could almost hear the mental calculations around the fact that this new bed does not have any walls. "Mama! Up! Hello!" Door knob rattling. Sigh. I feel that I may be in for a run of early mornings.

This is a rather amazing milestone in its way, though. We survived all of the baby years somehow. We've referred to them as "the boys" since Lime was born, and yet now they've really grown into it. I can't wait to learn what it feels like when we don't have diapers in the house anymore!

Summer seems to have flown by. This week is Lemon's last week of summer camp. I've had my doubts about the program but all in all I think it's been a good experience for him. It's definitely pushed him in new directions and given him new things to think about. By this I mainly mean that the camp seems to be devoid of toy vehicles, so he's actually had to do other things for part of his day. 

I still haven't decided what to do about "food school" during the school year. I'm still feeling like we really haven't made much if any progress over the course of the summer. We have a session tomorrow, so I'm going to ask the therapist to sort of assess and see if she thinks things have moved forward at all. Objectively, I know that it hasn't been that many weeks, and that learning isn't a linear process, but still, I wish I had some hint that this was doing something. Sign-up for fall slots opens tomorrow so I suppose I have to make up my mind pretty soon. A not-so-small part of me thinks maybe he still just isn't ready for this yet, or that this isn't the right approach. Hopefully some clues will emerge somehow.

Lime, meanwhile, eats everything in sight and remains tiny, 16th percentile for height and 4th for weight. Pediatricians seem to really like people to be above the 5th percentile but luckily our doctor was willing to sort of round him up. I'm to keep pushing the high calorie, high fat diet. At least for now both kids can eat the same things--or, really, I can offer them the same things, Lime can scarf his down like it might run away, and then Lemon can dispose of his uneaten food by dumping it onto Lime's tray. Whatever works.

Week 205: Thinking ahead

Seriously, people, where is the summer going? I am already deep in the mad scramble to assemble some sort of delicately balanced child care program for the fall. Our beloved afternoon nanny is leaving us at the end of next week to move back to Milwaukee. Both kids are going to be in school 5 mornings a week starting in September, so that takes care of the mornings more or less. After a couple of weeks of searching/panicking, I think we have someone pretty good lined up to cover the afternoons.

I've definitely noticed a change in myself when it comes to CF and child care. In our first few searches, I always brought it up very early in the process, if not during that first phone conversation then definitely during the interview, and it was a big serious thing. Now, I'm bringing it up at the very end. Like, here's the job offer, and oh, by the way, one of my kids needs medication every time he eats and I hope you love hand sanitizer. I guess it would be different if I were hoping the person would do his therapy or something, but I'm not, and at this point I feel like I want him to just be treated like a regular kid as much as possible. I don't want to form an impression in someone's mind that he's anything other than a curious, lively almost-four-year-old boy. Also, having been around the block a few times, I've discovered that pretty much anyone, including a college sophomore who frequently leaves his house keys in our living room, can manage to give enzymes accurately before every snack. So why make a big production of it?

I'm trying to decide whether I want to continue "food school" in the fall. It was easy enough during the summer--I only signed Lemon up for 4 days of camp instead of 5, and took him to food school on the free day. During the school year, though, he's booked with school every morning. So if we were to continue, it would mean squeezing it into the afternoon somehow. If we're still fitting a nap in there, which at the moment we are at least most days, it's pretty tight. A couple of weeks ago I had to take him in the afternoon instead of the morning because of his therapist's schedule, and I have to say it was pretty pointless. I woke him up from a nap to go, and all he wanted to do was sit in my lap and sulk once we got there. Really not the best use of time.

If I felt like he were making consistent progress, it would be a no-brainer to continue. But, I'm honestly not sure whether we're making progress or not. Every so often, I'll hear him mimic the language they use at food school. Or see him do something with food that the therapist there does. The thing he does most consistently that he learned at food school is to spit things out. And I totally get it, being able to spit things out makes him feel safe and in control and gives him an out if he gets into a food situation that he can't manage and all that. But OMG I am sick of dinner being spit on the floor. Especially because Lime has clearly picked up on the idea that spitting is somehow now OK in our house, so as soon as he sees Lemon do it, he does it, and the whole thing kind of devolves from there.

To further complicate matters, I feel like right now we're in one of those funks that we go through from time to time where Lemon is clearly working on some serious cognitive development and as a result is eating basically nothing. He definitely can't do two things at once in this respect. So, maybe I just need to let things play out for a little while longer. You'd think by now I'd be used to not knowing if some treatment was working or not, but it doesn't seem to get any easier!