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...)

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?