Monday, August 31, 2015

Week 106: Go pack go

I'm writing to you this week from the unincorporated village of Dyckesville, WI, located just to the northeast of Green Bay (as in Packers).  We've been up here for a few days, enjoying our first little vacation as a family of four.  Going on a vacation with a newborn and a two year old with CF requires a staggering amount of gear.  We have a Subaru Outback and I literally filled it to the rafters the morning of our departure: crib, Rock'n'Play, booster seat, stroller, clothes, toys, books, shoes, travel nebulizer, and yes, the vest, which we decided to take in the end.  Add to that some basic food supplies, diapers in two different sizes, and the all important water bottle full of bourbon, and the car was completely full.

We left Madison after dinner on Thursday night, and arrived here at close to 10pm.  The drive itself was uneventful, although Lemon found it so exciting that he stayed awake the entire time and passed out as soon as we got his crib set up in our cottage here.  Lime, on the other hand, succumbed quickly to the vibrations of the road, only to feel so revitalized by the long snooze that he stayed up until midnight.  Our vacation got off to a somewhat inauspicious start on Friday morning, when we took Lemon to the beach on Lake Michigan that's at the end of the driveway of the little cottage and his ball blew into the water.  Papa Bear executed a heroic rescue, but Lemon couldn't be consoled and ran screaming back to the cottage, begging to go back inside.

He's warmed up to the whole concept, though, and we've done a lot of fun things including a visit to the National Train Museum:

A wildlife sanctuary, where the main thrill seemed to be climbing things:

and a wonderful farm/historical museum with many friendly, corn-motivated animals (and seriously, if you've never watched a toddler jump around trying to imitate a 6-day-old goat, you should some time):

Even the beach finally started to grow on Lemon, especially after we devised a new use for the boat ramp:

We also really came to appreciate the small town America feel of our little vacation destination:

The days have flown by, and we've felt the constraints of our schedule even more so while being on vacation--it's really hard to squeeze in the fun activities between the essentials of daily living in our household.  Also, although I hadn't thought of it at the time, it's a really good thing I rented a free-standing cottage for this trip: we are a noisy bunch!  Between the vest twice a day with the videos blaring at full volume, the usual hullabaloo of a toddler in full cry, and the nighttime shenanigans of a newborn, we can disturb people at pretty much any time, around the clock.

Sadly, our bourbon is now gone, and it's time to drive home tomorrow to resume our regular lives.  Lemon has his pre-school orientation tomorrow, so we'll see how that goes.  I haven't quite managed to find the time yet to draft a letter to his teachers and the parents of the other kids in the room explaining what CF is, but I'm hoping I'll get to that on Wednesday so it will be ready in time for the real first day of school on Thursday.  And then it will be fall--this summer sure went by in a hurry.  

Monday, August 24, 2015

Week 105: We are two

Because every major family event must be marked by some sort of travel difficulty, the only cloud in the sky as we approached Lemon's second birthday was the absence of Grandma Carol and Grandpa Dudley, who had planned to join us from New York for the celebration (and to meet Lime for the first time!).  Unfortunately, Great Grandma Virginia was not feeling well and they had to cancel their trip at the last minute.  It's been altogether too long since we've seen them, so hopefully we will find a way to all wind up in the same place soon.

Without Grandma and Grandpa, Lemon's birthday was a pretty low-key affair.  I made a big chocolate cake, and also a special birthday lunch for Nona, whose birthday is one day after Lemon's.
Papa Bear came home early from work, and the five of us had a nice little party at home. 

Papa Bear and Lemon had fun opening one of his presents---some more wooden train tracks to expand the set he inherited from Uncle Jared. 

The day after Lemon's actual birthday was his two year checkup.  We were relieved to learn that in spite of his new stubbornness about eating, he's still keeping up with his weight gain (how???) and is now over 26lb.  He's gotten much taller in recent months, too.  Amazingly, he didn't need any shots and doesn't need to see the regular pediatrician again until he's three!  Of course, we'll see the CF clinic many times before then, but it definitely feels like a milestone to be going a year between regular checkups.  But, don't worry, Lime has the same pediatrician as Lemon and he will need to go at 2, 6, 12, 18, and 24 months so the doctor won't forget who we are.

In honor of Lemon's second birthday, we tried for our first family portrait as a foursome.  It wasn't exactly a success, but  all four of us are present, and I think that the pictures accurately capture life in our household right now!

Later this week we will attempt another first as a family of four--our first family road trip vacation, to Green Bay, WI, which is about 2.5 hours north of us.  I'm already making lists of everything we need to bring, and wondering if our car is really large enough to transport everything and still have room for the people, too.  We've been debating about whether we should bring the vest.  It takes up a lot of room (especially compared to the manual PT cups, which can fit in a sandwich bag).  The compressor itself goes in a roll-aboard-size bag with wheels, and then there's a second smaller bag for the hoses and the vest itself.  So, practicality says to just do manual PT while we're away, since we have to bring so much other stuff.  On the other hand, Lemon is really used to the vest now and I'd hate to change up the routine and then have him fight the vest when we get back.  I suppose we'll see how loading the car goes--I'm planning on doing nothing else Thursday morning! 

Lastly, we'd like to wish a hearty "Mazel Tov!" to Cousin Nathan and his beautiful bride.  We were disappointed to miss yet another big family event on the east coast, but hopefully this will be the last event that we miss for a long time.  Wisconsin being what it is, nothing is guaranteed, but we are determined to leave the state sometime in the next 12 months!

Monday, August 17, 2015

Week 104: Two under two

Although it's a few days premature, I think I can safely say at this point that we all made it through our brief experiment with having two kids under the age of two. 

Our nanny took this week off to deal with a family situation, and Nona and Opa were away for part of the week, so I spent A LOT of time with both kids.  I tried go on some sort of excursion with them each day--a trip to our local municipal airport, apple picking, a trip to the zoo, a trip to the grocery store, whatever it took to keep Lemon entertained (and tired enough to take a long afternoon nap!). 

We're also getting ready for the big event--Lemon's second birthday is just a few days away.  Being the "practical parent," my gift to him this year is a wheeled cart for his vest and nebulizer, so that they can be easily stowed in his closet while not in use.  We enhanced it with an iPad on a stand with speakers (so you can actually hear the videos over the noise of the compressor), and then added on a power strip so we only have to plug and unplug two cords each time.  The cart came with some nice hooks so that we can hang up the cords when they're not in use.  I know--being the practical parent is somewhat boring, but hey, it makes life run more smoothly to have one, right? 

And, I picked out a fun-but-practical gift for him, which Grandma Carol generously provided--a miniature trampoline to help him burn off some of his energy on rainy or cold days when we're stuck inside.  Plus, jumping on a trampoline is supposed to be very good therapy for CF lungs.  Of course, Lemon had his own ideas about what a trampoline is for.

Lemon is continuing to do really well with his vest treatments--I think he actually looks forward to the afternoon session because it's kind of nice to just relax on the couch and watch videos for a half hour at the end of a busy day.  He also really likes it when his little brother is in the room to "watch" him do the vest.  And how does Lime respond to being in a room with YouTube videos blasting at full volume over the thump of the compressor? 
Lime has continued to grow like a weed in a Wisconsin summer.  He was weighed today as part of a research study that we're participating in, and tipped the scales at a whopping 9lb 10oz, or a gain of over 1lb/week since coming home from the hospital.  No wonder I'm feeling a little drained!

Monday, August 10, 2015

Week 103: Vest at last

Lime is exactly one month old today--how time flies with the second baby.  He's starting to be awake for more of the day, and he's really able to focus his eyes on objects that come close enough for him to see.  He continues to be very even-keeled, and doesn't protest too much when his brother's trucks come a little too close for comfort.  He has a bit more of a "witching hour" than Lemon did, but even that is pretty mellow as these things go.  He is definitely continuing to pack on weight, and has maintained the feeding schedule necessary to maintain his current growth rate (yawn).

Lemon is acting more and more like the two year old he will soon be.  This week we've really struggled with eating, he turns down almost everything and often won't eat enough at a meal and get really hungry and cranky an hour later.  We're trying not to cater to him too much, offering him a few options for each meal and letting him figure out if he's going to eat them or not.  This week it's mostly "not," even his favorite foods, but this is something he'll just have to work through himself--we can't force him to eat!  Still it's incredibly frustrating after all the great weight gain we had in the last few months, to know that toddler stubbornness is going to take some of that back from us.  But, as I once heard a child feeding expert say, kids won't starve themselves to death, so eventually when he's hungry enough he'll start eating normally again.  Whether that happens before his parents lose their sanity is a separate question.

The biggest news this week is that we FINALLY received our vest.  After some final logistical snafus that involved our vest being temporarily MIA on a UPS truck somewhere in the great state of Wisconsin, it finally arrived and we had our training session on Thursday.  With all Lemon's recent wilfulness, I was a little apprehensive as to how he would respond to the vest, which basically is like putting on one of those paint-shaking machines that they have at the hardware store.  But, to my relief (and to the utter shock of the guy doing our training), Lemon didn't object at all to putting the vest on, and sat through a full half-hour treatment session without uttering a single word of complaint. 

So, our new routine is to do the vest treatment, which takes 30 minutes, twice a day.  In the morning, we do the nebulizer first, which takes about 10 minutes, so with setup time we spend probably about an hour and a quarter a day on treatments now, when Lemon is healthy.  That may not sound like a lot, but Lemon is actually only awake for about 9 hours a day, so almost 15% of his waking hours are spent doing his maintenance treatments.  That will expand to almost 30% of his waking hours when he is sick.  As we try to make time to have Lemon socialize with other kids, to start preschool, to go on more outings, I am starting to really feel the constraints that CF is placing on our lives.  Between sleep, therapy, and meals, there is so little time left (and only in very short blocks) for doing anything else.  Add a newborn to the mix and leaving the house seems to require nothing short of a highly improbable alignment of planets.  Luckily for me, the planets did somehow align on Sunday afternoon, and I was finally able to take Lemon out for a ride in our bike trailer--the first time we've managed it this summer.  He absolutely loved it, as did I, so I'm hoping we can somehow manage to do it more often for the rest of the summer.

Monday, August 3, 2015

Week 102: Local color

After the big emotional high of last week, it was nice to have a fairly normal week at home as a family.  Or, at least, as normal a week as one can have with a mama on maternity leave and two under two in the house.  Lime continues to focus on eating, sleeping, and growing.  It is truly amazing to watch how fast a "normal" baby puts on weight, and how effortlessly.  Well, effortlessly for the baby, anyhow. 

The only minor drama we had with Lime was more classic Wisconsin--somewhere between the form that Papa Bear carefully filled out and the issuing of the insurance card that we received in the mail, Lime's last name got changed to something that sort of vaguely rhymes with Papa Bear's and contains several of the same letters, but is in no way the same.  Of course, both the HR department at Papa Bear's office and the insurance company insist that there is no way that they were responsible for the error.  I'm inclined to believe that, even with a newborn in the house, Papa Bear is capable of spelling his own last name correctly, so I sort of doubt that he introduced the error.  In any case, he was patient enough to send multiple emails and make the requisite half-dozen phone calls to get everything straightened out again.  Who knows, by this time next year someone may have figured out how to bill the insurance company for Lime's first few pediatrician's visits.  I won't hold my breath.

Lemon continues to make excellent progress in terms of getting used to sharing "his" people with Lime. 

Lemon is also continuing to have a great summer, with lots of local adventures like harvesting vegetables from our garden, trips to the playground, and his very favorite, observing the trucks that come through our neighborhood.

By far the cultural highlight of this week was our outing to the National Mustard Day festival in the neighboring town of Middleton, home of the National Mustard Museum.  Lemon especially enjoyed the live music and a frozen dessert called "Mustard Custard" provided by the local restaurant chain Culver's.  Yes, it is exactly what it sounds like--frozen custard, flavored with mustard, and served with a topping of crushed pretzels.  It is as weird as it sounds but not half bad if you come at it with an open mind.

We're anticipating an exciting week this coming week because, a mere 10 or so weeks after we initiated the process, we finally got approved for Lemon to receive his vest, which will replace the chest PT that we've been doing manually since Lemon was just a few months old.  I am definitely looking forward to the vest's arrival, since there have already been many times where I've had my hands full with doing PT on a squirmy almost-two-year-old when I hear Lime start to squawk in the next room.  A company rep is coming to our house on Thursday to train us on how to use it, and to do a therapy session with Lemon.  Hopefully he'll be amenable--he tends to roll with almost everything so I am optimistic, but this will be a huge change for him.  We'll see!