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...)

Monday, August 7, 2017

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?

Monday, July 31, 2017

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.

Monday, July 24, 2017

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!

Monday, July 17, 2017

Week 204: Pink carnations

One of the hardest things about being a working parent is dealing with child care. Figuring out the right situation for your kids, finding the right providers, making sure that all the time you need covered is covered, making sure things are being done the way you want them. All of it is a challenge and it is a constant challenge because at any moment, usually the least convenient moment, one link in your carefully calibrated care chain is likely to break.

We have been very fortunate to have a string of excellent people taking care of our kids. The first person who took care of them was a woman named Julie. Way back then, in the waning months of 2013, we were still living in Boston and I was interviewing from afar, trying to get child care set up in Madison before we moved. I liked Julie right away, and she was clearly head and shoulders above everyone else that I interviewed. When we moved to Madison and met her in person, I knew she was the right person for the job. She was very experienced, calm, collected, responsible, and she got Lemon to fall asleep in her arms the first time she met him.

Over the years that she worked with our family, she was the source of a lot of stability in what was otherwise a fairly turbulent time. She took great care of Lemon, the cats, and our house and made it feel like we were still a functional family, even through the great swings of Lemon's first years, when he was very sick a lot of the time. She could get him to eat when no one else could, and hers was the first name of a non-family member that Lemon ever uttered.

Julie was the first person to guess that I was pregnant with Lime, before my own mother I have to say. One morning, very early on, when I was feeling awful and trying to hold myself together enough to get out the door to work, she just gave me a funny look and said, "So, when are you due?" She was so attentive during the pregnancy, texting me during all the various tests and monitoring that I underwent during the second half of the pregnancy, when everyone thought that Lime was growth-restricted. She took great care of Lemon while I was in the hospital, and was one of Lime's very first visitors the day after he was born. She dressed up and put on extra make-up for the occasion, and brought me a bouquet of bright pink carnations to decorate the hospital room.

Julie's time with our family came to an end when a series of health issues of her own prevented her from continuing to work with our increasingly active kids. We were both very sad when it became clear that the situation couldn't go on any more, but it was clear to both of us that Julie needed to focus on her own health, and Lemon and Lime needed someone who could keep up with their frenetic pace. We stayed in touch since then, with me sharing pictures of the kids and Julie offering tips and encouragement. We shared a dream that, once the kids started school in the fall, with her health improved, Julie could come back and watch the kids for an hour or two in the mornings before school, doing all the things she loved--picking out their outfits, combing their hair, and keeping them out from under foot while she did housework.

Sometimes, dreams remain dreams. It is with a heavy heart that I have to share with you that Julie passed away unexpectedly this past weekend. Her passing is a reminder that, no matter who you are, life is fragile and fleeting. Thanks Julie, for everything that you did for us, and for all the love you gave to our boys. I hope you are sitting on a lounge chair somewhere in the shade of a palm tree, with your toes in the sand and a sea breeze lifting your hair.

Monday, July 10, 2017

Week 203: Cake by the ocean

We are back at home in Madison after our big family trip to the beach. I can't tell you how amazing it feels to have planned a trip and actually gone on it! The trip wasn't without its ups and downs, mind you, but none the less, we felt more or less like your average family on a vacation. Here's how it went:

We flew to Reagan airport in Washington, about a 2.5 hour drive from the beach. We decided that it would be unwise to attempt to both fly and drive on the same day, so we spent the night in a hotel by the airport. Because we were just staying there one night and didn't want to make it a huge production, we decided not to do an overnight feed for Lemon. That may have been an error, since the excitement of travel plus the 1500 calorie shortfall basically made him a complete wreck the next day. We started driving fairly early the next morning, as did approximately everyone else on the Eastern seaboard. Traffic was pretty intense, extending our 2.5 hour drive to 5 hours. Of course, the great benefit of traveling in a car for 5 hours with two kids is that at any given point in time, one of the two will have enough energy and rage to be screaming. Lime slept for the first part of the drive, while Lemon took the lead on vocals. When Lemon finally passed out, Lime immediately woke up, began weeping, and intermittently yelling "Home! Home!"

It was all worth it once we got there, though, because Lime had never seen the ocean before, and when we finally got to the beach he could not believe his eyes. Lemon was also thrilled. Plus, Uncle Jared and Auntie Lauren were there. We got all our various equipment set up in the beach house and tried to settle into something resembling a vacation routine. Manual PT went surprisingly well, which is good given that I don't think we had the physical capacity to transport the vest in addition to all the other myriad supplies that we needed to bring with us.. Lemon was generally very cooperative, and his lingering cough actually completely dried up on the trip, making us think that it was allergies after all. We brought Cayston with us but we didn't end up using it.

Lemon and Lime had a great time getting to know their cousins, and I was so glad to finally be reunited with my extended family after a brief 3 year absence. With all the various shenanigans in our lives, I think I've missed two weddings, a funeral, a Thanksgiving, a family reunion that I organized, and numerous other smaller occasions besides. So it was wonderful to have a week with no particular plans to just soak up being reunited with some dear people that I've known my entire life.

The only teensy wrinkle in the whole thing was that our family came down with some sort of gastrointestinal plague. Papa Bear was the first to fall ill. We suspected at first that it was food poisoning, and after an unpleasant night, Papa Bear had to spend the entirety of the next day in bed recuperating. I didn't feel too hot myself, but I attributed that to the fact that I had to deal with the kids without his help for an entire day (of course, the only day of the trip during which we had significant rain). Nona was a hero and basically saved me from implosion, but it was a near thing. In retrospect, it seems clear that I had a fairly mild version of whatever Papa Bear had. That night, both Opa and Lemon succumbed. Without going into significant detail, I will report that by the end of the night Lemon was sleeping on a folded bedspread on the floor covered with a towel, and I have never done more laundry on a vacation in my life.

At home, we have a pretty strict rule that if a night of tube feeding "doesn't go well," the next night we only attempt one carton of formula instead of the usual three, and then build back up to three over the subsequent nights. Because we were on vacation, and because everyone else who was stricken by the plague only had one "bad" night, we forgot our usual rules and went ahead with three cartons again the next night. This proved to be a significant strategic error. More laundry. Amazingly, Lemon was his usual energetic self during the days, with no hint that anything had been amiss at night.

Fortunately, everyone was more or less in working order for the journey home. There was no traffic, so we zipped inland in one swoop and spent a day exploring the Air and Space museum, where by exploring I mean that Lemon and Papa Bear looked at exhibits while I frantically tried to keep Lime from injuring himself or disappearing into a crowd. Finally it was time to fly home, and here we are.

Amazingly, today is Lime's second birthday. I can hardly believe that he is two, although he clearly read in the child development book that he is supposed to be having a verbal explosion around now and learned at least 20 new words on our trip. We had a nice party for him with our family while we were at the beach, so we just did a quiet celebration for him here tonight. His sunny little personality has gotten me through many dark times in the years since he was born, and I can't imagine our family without him. Happy birthday, little buddy. Here's hoping we'll be celebrating with cake by the ocean again next year.

Monday, July 3, 2017

Week 202: To the coast

We made it. I'm still not sure exactly how, but nonetheless, here we are, soaking up sun, sand, and salt water on an Atlantic beach. I won't go into detail on the journey, which went about as well as could be expected. I prefer to focus on the result--we are all here having a good time, spending time with family that we haven't seen in far too long. All of our CF related plans seem to have worked out fairly well so far. The travel IV pole made it intact, the case of formula did not explode while in our checked luggage, TSA did not make me unpack my giant carry-on bag of medical supplies, and manual chest PT is going fine. Lemon's cough has actually pretty much disappeared since we left Madison, which makes me think it really was just allergies. So, we brought Cayston with us as a back-up but I think unless something changes pretty dramatically we won't use it.

I'm going to leave this one brief tonight, since I am on vacation after all (and Lime has decided that in order to maximize the vacation experience, he will now wake up _before_ the birds), and will provide a more in-depth summary of the whole trip once we're looking at it in the rear view mirror. Until then, happy Independence Day too everyone!