Monday, June 27, 2016

Week 149: Just grand

Another fine June week out here in Wisconsin.  Our garden is going strong--well, the weeds are, anyhow, and the first raspberries are ripening. 

 This week, we're enjoying a nice visit with Grandma Carol and Grandpa Dudley, who flew out from New York to spend a few days in our busy household--I don't think they'd quite realized just how busy things are around here, with two very active boys.  At least there's no shortage of entertainment.  We've done all the usual things--the swing set, the various play spaces in the house, the zoo.  We even ventured to a restaurant--with adults outnumbering kids 2:1, we made it until we were almost half-way through the meal before things started melting down.  Luckily we'd come in two cars so Papa Bear could take the younger members of our dining party home for a nap.

This week also marked my first official race since Lime was born.  It's been much harder to train with two kids in the house than I'd thought--carving out time for long runs is pretty tough and I've done more of them than I'd like on the treadmill after the kids go to sleep.  But, it's pretty essential for my sanity that I get the exercise and a race is always a good target to keep me motivated.  I ran the Her Madison Half, which is an all-women's race that has the ultra-convenient feature of starting and finishing walking distance from house.  It was a good run overall, although I have to say I think I"m done with June races.  It rained heavily for a couple of hours before the race, and once the rain stopped the heat turned on and it was like running through a steam bath the whole way.  Nonetheless, it was a good confidence builder, and with a successful half-marathon under my belt, I'm turning my eye towards fall and the Madison marathon.  Stay tuned...

Tomorrow I'm taking Lemon for a check-up at the CF clinic.  With the umpteen imaging studies and the whole episode of The Arm, I feel like I've been half living at Children's Hospital, so it's weird that it's been as long as it has since we actually checked in at the CF center.  Lemon's regular doctor left, and the nurse practitioner that we've been seeing in the mean time is out on medical leave herself, so we're seeing the center's director.  It will be only our second time ever seeing him in clinic (and the first time was 2 years ago), so I'm looking forward to getting a fresh set of eyes on Lemon to see if there are any new ideas we can explore or new treatments we can try.    I'm also looking forward to an update on the effort to recruit someone to replace Lemon's former doctor.  Although I like our nurse practitioner a lot and have confidence in her care, I really would like to get back to having an MD guiding Lemon's care.  I really enjoyed the scientific rapport that I had with Lemon's old doctor, and hope to find that again in his replacement.

Meanwhile the pediatrics clinic did manage to hire a replacement for the boys' pediatrician, and after about a month (lightening speed by UW standards), they got the new doctor set up in the computer system so that they could actually schedule Lemon and Lime's 3 year and 1 year checkups.  The scheduler decided (without consulting me) that it would be a good idea to have them go at the same time.  While I appreciate their consideration for my time, I think I'm going to call and schedule them for separate days.  I have enough trouble entertaining one bored kid in a locked cell, never mind two!

Monday, June 20, 2016

Week 148: A window to throw it out of

As may be obvious, I had never potty-trained anyone prior to this week, so I really didn't quite know what to expect going in.  Our plan was to us a version of the "bare bottom" method, whereby one morning you take off the over-night diaper, bid it farewell, and then spend 48 hours or so having the trainee run around with no pants on in close proximity to the potty.  On Wednesday, Lemon and I went on a special outing to Target to buy him his first undies, with Ninja Turtles and Finding Nemo (am I dating myself?) characters on them.  Saturday morning, we bid diapers adieu.

Overall, things went pretty much as well as I could have hoped.  Lemon has not had any significant #1 accidents, and over the past 72 hours has become what I would consider fairly reliable at identifying the need to go.  After the first few hours with no pants, he insisted that he'd gotten the idea and wanted his new undies.  Although the infinitely wise people on the internet say to hold off on undies for a while, he wanted them really badly and had been doing a good job, so we let him wear them.  They didn't seem to confuse him at all, he has the distinction between diapers and undies pretty well worked out in his little mind. #2 has been a bit more of a challenge in that he's really reluctant to do it on the potty (common, sayeth the internet).  He's stuck with executing that particular function in his diaper at nap time or while he's wearing his night-time diaper.  And you know what--that's totally fine with me.  As long as it is not on the floor or in the pants I don't care. 

The thing that has surprised me about this is how hard it has been for Lemon.  On the one hand, I would say he was clearly ready.  He got the hang of it right away, is proud of his ability to do things in the potty and flush them, and loves his undies.  On the other hand, this process has clearly taken every single little grey cell that he has, and he is EXHAUSTED.  He is using up all of his self-control on mastering the business with the potty, which leaves very little self-control for things like not hitting one's sibling or headbutting one's parents.  He had to take two naps today, and passed out without a peep at bed time.  Hopefully in the coming days, this will become a bit more routine, and he'll get back to his usual self.

I would have thought that so many of the other things that Lemon has experienced in his life would be harder on him than this, but looking at our recent list in retrospect, the only thing that comes close is the gastric emptying study.  I think the other things (being hospitalized, wearing a cast, doing G-tube feeds) are things that we've largely handled for him.  Yes, he's had to go along with it, but those things didn't require as much mental effort on his part.  Potty training, on the other hand, is all on him--we can set him up in an environment where he's likely to succeed, but ultimately he's the one who has to do it. 


Finally, following on Father's Day, a word or two on Papa Bear.  He doesn't get a lot of airtime on the blog but he is an anchor of this family, the most dedicated co-parent I could hope to have.  He has the perfect combination of serious-minded commitment to his kids well-being blended with a playful and imaginative nature that balances out the somewhat relentless realism and pragmatism that the they get from other parental figures in their lives (ahem).  The kids adore him and it's obvious why.  He's the one who invented the Time Tunnel to the Future and the Tickle Tent, the one who's read Lemon the same Richard Scarry books a thousand times over, the only adult male that Lime really trusts, the singer of song parodies and maker of terrible puns that Lemon doesn't quite get yet.  And also payer of bills, filer of taxes, lead wrangler of pharmacy and insurance company, patient watcher of infinite therapy-time YouTube videos, co-napper in chief and hospital supply run guy extraordinaire.  Fathers wear a lot of hats, including those made out of foam alphabet floor tiles, and you wear them all like you were born to it. Happy Father's Day, Papa Bear!

Monday, June 13, 2016

Week 147: Free to be three

On Wednesday, we had an appointment at good old Children's Hospital to take another look at Lemon's arm.  After all the lengthy and sort of uncomfortable imaging tests that he's undergone recently, he was a little hesitant about the x-rays at first, but brightened up considerably when he understood that yes, we were really only taking pictures of his arm, and yes, really only three of them.  Our orthopedist took a look at them and proclaimed Lemon's arm officially healed.  Lemon put his splint in the trash all by himself--surprising the doctor who thought we might be keeping it as a memento. I cannot even begin to tell you how foul, how nasty, how embedded with stench and contagion that thing had become.  No thanks.  We have lots of pictures and they don't emit the aroma of death and Pediasure.

Thursday was Lemon's last day of 2-year-old nursery school.  I have to say, with the hard year that we've had, school was one highlight.  We had debated quite a bit as to whether to send him because we were worried about what he might catch from the other kids, and we also weren't sure whether at two he was really ready for nursery school.  As it turned out, catching things from the other kids was the least of his concerns this winter, and he absolutely blossomed during his time there, making his first little friends and learning so many important life skills.  I couldn't be happier about our decision to send him, and am already looking forward to the start of his 3-year-old class in September.

I don't know if it was the cast coming off, the arrival of the warm weather, the end of school, or some combination of all of the above, but Lemon basically woke up Friday morning and decided that he was in effect a three year old.  To our chagrin, he's all of a sudden not taking quite so kindly to having a little brother anymore.  Also in the last few days, he's figured out a bunch of new tricks to try and manipulate us, some of them very specific to CF--such as sneakily disconnecting his feeding tube from his belly while he's being put to bed, such that during his story the formula that's supposed to be getting pumped into him gets pumped all over his sheets instead, necessitating a big production of stripping the bed, wiping down the waterproof mattress cover, and remaking the bed.  Or, if he is awake and lonesome during the night, pinching or kinking the feeding tube, which causes the feeding pump to alarm and bring someone running.   

Lime, meanwhile, is doing everything in his power to leave babyhood behind.  He gets closer to walking every day, and is developing a very clear little personality, with defined likes and dislikes.  Of course, one of the things he likes is "whatever Lemon has" and one of his dislikes is "what Lemon does to whoever tries to take what he has" so that keeps things interesting.

Speaking of interesting, we're taking the plunge this coming weekend and attempting to toilet train Lemon.  Toilet training can be a challenge with any kid, but one thing I'm especially concerned about with Lemon is that with his wonky CF digestive system, he still poops something like 6 times a day (TMI, I know).  I'm vaguely prepared for pee accidents (one of his friends from school gave us a test run of that when he came to visit this past weekend), but I'm not really excited about poop accidents, and I can't see how they could be avoided with someone who poops that much.  Suffice it to say we will essentially be living in the back yard this weekend, and I suspect that 150-foot hose that I picked up a few weeks ago will be coming in handy...

Monday, June 6, 2016

Week 146: Emptying

We survived the second of our gastric imaging tests.  It was about a thousand times easier than the gastric emptying study.  Based on our experience with the emptying study, I'd brought a new toy and some books with us to keep Lemon distracted and happy.  The plan back-fired slightly in that the new toy that I brought was much more complicated to put together than I thought (Playmobil tractor, about 1000 pieces, some the size of a match stick).  Then the imaging test itself went so fast that Lemon couldn't even really get down off the table, so he was a bit frustrated that his new toy (or the 3 pieces of it that I'd managed to throw together plus the 997 other ones) was sitting on the floor where he couldn't reach it.  I gave him a wheel to hold onto during the test and that seemed to placate him at least long enough for the images to be taken.

We'd been told that Lemon would be given barium as a contrast agent, but they ended up going with iodine instead.  I had the pleasure of teaching the radiology chief resident how to connect and use a g-tube extension, and then he pumped 50mL of an iodine suspension into Lemon and started taking pictures.  The long and short of it is that the results of both this test and the earlier one were normal.  His anatomy is normal, no reflux that they could see, and his liquid emptying rate is normal.  They can't say anything about the solid emptying rate unless he's willing to eat solid food for the tests, so when he's in high school perhaps we'll learn the answer to that question.  In the mean time, when he's sick next there is a medication we can try to help speed the movement of things through his digestive tract.  Of course, that's probably what we would have done without all these imaging tests anyhow, although now I guess we have the reassurance that at least his anatomy is all good. 

Anyhow, that closes the chapter on GI for the moment, and with any luck on Wednesday we will close the chapter on his arm with our final visit to orthopedics.  Then, undoubtedly, we will begin some new chapter that will require bimonthly visits to the hospital.  But, for the moment, I'm looking forward to clearing a few things off our plate!

We're a little sparse on photos this week because for the last 5 days I've had both kids by myself while Papa Bear traveled to a conference.  It was definitely extremely busy, to take care of two very little kids plus do all the extra stuff that Lemon needs.  Nona and Opa were heroes as always, giving me a few much-needed breaks.  Overall, though, I felt pretty empowered by the experience.  We all survived, and even enjoyed ourselves most of the time.  It's definitely easier with two adults in the house but when push comes to shove I really can do it and have a good time at the same time.  It only involves some minor concessions like giving up cooking adult food, reducing personal hygiene to a fairly minimalist program, and making peace with the fact that reading anything longer than a typical newspaper headline is simply not happening.  Suffice it to say, I'm glad that Papa Bear is back!