Week 71: South Ozone Park

We have now learned that all trips from Madison to the east coast in winter involve some sort of incident.  In this case, the "incident" was that Grandpa came down with an upper respiratory infection complete with cough, low-grade fever, and wheezing right before we were supposed to fly out to New York for our annual Christmas visit.  Not wanting to risk exposing Lemon (who is on his third course of antibiotics so far this winter) to yet another illness, we decided that Lemon and Grandpa couldn't see each other.  It was a tough decision, because they have so few chances to get together, but ultimately his health has to come first. 

So, instead of staying in Manhattan for five nights and making a daily trip out to Queens on the subway to see Grandma, Grandpa, and Great-Grandma, we decided to just stay in Queens in a hotel so that it would be a short drive for Grandma (who remained healthy) to come see us.  And thus it was that we ended up celebrating Christmas in a La Quinta Inn and Suites in South Ozone Park.  For those of you who have not had the pleasure, I will only say that there are likely several good reasons why you have not made South Ozone Park a specific destination on your trips to New York City.  But, our room was large, clean, and cheap, which was an advantage given that we were basically confined to the hotel for 48 consecutive hours.  Grandma came to visit us every day, bringing her magic Duane Reed bag of surprises for Lemon.

In spite of being a little confined, we managed to find ways to keep ourselves entertained.

We even went out to a classic New York dinner (called the Classic Diner) where Lemon ate one of the biggest meals of his entire life.

Because of how our New York plans got turned around, we decided to fly to Boston a few days early, giving us a total of about 10 days in our beloved former home town. 

We've already been busily making the rounds visiting our old friends, and it has been absolutely wonderful.  We have lived in Madison for almost a year now, and definitely appreciate many of the great things about it.  But if home is where the heart is, then this is home, and 10 days isn't nearly enough.

Week 70: Bah humbug

Scrooge alert: everyone who knows me personally knows that I am not exactly a big holiday celebrator.  I didn't grow up celebrating Christmas and it's never made a whole lot of sense to me.  I understand at an intellectual level that other people enjoy it, and that's great, but for me personally, it's never really resonated.  Of course, I married into a big Christmas celebrating family, so I've been forced to adapt somewhat. 

This weekend, we did our own little pre-Christmas celebration here in Madison, since we will be in New York City for the big day itself.  Papa Bear gets 100% of the credit for the whole thing (see above) and I documented the event.  He set up his little artificial tree, and wrapped all of Lemon's gifts from Grandma and Grandpa and some family friends and arranged them all around.  On Sunday morning, we had gingerbread pancakes (my one major contribution to events) and then went down to unwrap our gifts.

Lemon was definitely excited about his new stuff, especially his new stacking trains and a big yellow dumptruck.  He also got some nice new floor mats to make his play area a little safer.

 

There was even a little something under the tree for yours truly, who has been doing more handy-woman projects than usual as of late:

Just to top off the whole experience, Lemon got sick again.  Basically the exact same pattern as his Thanksgiving illness.  He caught a cold about a week ago and just couldn't shake it, and then started coughing.  It's been a little up and down, with him seeming better sometimes and worse at others, so we hemmed and hawed a little bit about whether we want to call for antibiotics.  Ultimately today we decided to go ahead.  Based on the past, I know that once he starts coughing he really can't turn the corner without the medicine.  If we weren't going away, and if the holidays weren't coming up, I might have given him another day or two just to see if this time would be different, but ultimately I think we made the right decision.  As I listen to him cough in his sleep as I type this, I know that we need to really be aggressive to preserve his lungs.  And if he's on antibiotics when we fly at this peak travel time, and on antibiotics when we ride the New York City Subway, it's probably not the worst thing in the world.

Week 69: Rethink the premise

Our battles with food continue.  And by that I mean that Lemon continues to not want to eat much, and Papa Bear and I battle the urge to push him, to coax him, to chastise him, to do really anything that will get him to eat more.  The research is pretty clear that none of those things work, and are actually counterproductive, so we're hanging on at every meal, praising when Lemon puts something in his mouth and holding our tongues the rest of the time.

In case we needed things to be a little bit harder than they are, Lemon has decided that for the moment his favorite drink is water (tons of calories, yay!) and he wants to forgo his former mainstays of smoothies and whole milk fortified with heavy cream and Carnation Instant Breakfast.  So, now every meal consists of me thinking about what choices to offer him, laying them out on his tray, and watching him throw them on the floor, every so often putting something in his mouth.  He even refused to eat for the nanny on Friday, which is totally unprecedented.  Secretly, I was a tiny bit glad he refused to eat for her as well, since I think she views me as mildly incompetent when it comes to child rearing.

We played out this little drama again this evening, when I offered him egg noodles, baked beans, and some cut-up pear.  All that went on the floor, along with the cup of milk.  In a moment of weakness, I decided to also offer him a yogurt, something I don't usually do at dinner.  And he ate the whole thing.  Then I offered him a squeeze pouch of some sort of fruit mixture with beets.  He ate all of that, and all of the second pouch, too.  I was elated.  I hope I didn't do more harm than good by letting him know that it was possible to wear me down to the point of offering him other choices.  But, on the other hand, I got 250 calories into him that wouldn't have gone in otherwise.  So, maybe I just need to rethink the premise on which we start dinner--with a calorie goal rather than a specific food goal?  Who knows.  In any event, a little pro tip: best to change out of your white work slacks prior to feeding the beet puree pouches.

Other than thinking about food, we did some fun stuff this weekend--we went to the Madison Children's Museum for the first time.  Lemon totally loved it, so we got a membership.  Honestly at this age, he would have been totally happy just to hang out in the lobby and look at the amazing kinetic water sculpture that they have.  If you know the one at the Boston Museum of Science, just imagine that but all the balls are propelled by jets of water, and there is a  moat around it and a big vortex in the middle.  It is pretty fascinating.  We also had fun in the room for kids 5 and under, complete with a slide made out of a tree trunk that we rode several times.

We also went to Papa Bear's work holiday party, where Lemon demonstrated one of his favorite new passtimes, "hiding" in very small spaces...

 

Week 68: Too little

We had a truly epic check-up at the CF clinic on Friday.  I thought that I had gotten used to them, but maybe I was wrong, because this one felt like it took all day and really sapped all my energy.  Objectively I think we were there for about two hours, which really isn't that different than usual, but it sure felt longer.

We started with a 4th year med student.  I work at an institution of higher education (a medical school in fact).  I am a total believer in training.  But when she walked in as the first person in a long line of people that I knew we would have to see that day, all I wanted to say was, "Can't you see that I'm locked in this tiny room with a toddler who is getting closer to a meltdown by the moment?  Go get the real doctor!"  So, I tried to be patient and answer her questions, knowing that we would have to go through everything again once Lemon's real doctor showed up.  And, honestly, I could see what the training is for--she took a really lousy case history.  Her main question was "Is there anything else that I should know about?"  Which she asked after every single thing I said to her.  I managed not to throw anything and refrained from giving her real-time feedback.

Then our real doctor showed up.  The good news: in spite of two illnesses that have required antibiotics since last time we were in, Lemon's lungs continue to sound great.  The bad news: his weight gain is off.  Perhaps it's not surprising given the illnesses and how active he is now, but it's still disheartening.  His height and head circumference are still right on track with his growth curve, but that all-important weight isn't keeping up.  He's down to the 10th percentile for weight now, which is just not where we want to be.  We're increasing his enzyme dose and we came up with a few more ideas for squeezing yet more calories into his smoothies.  As Nona correctly pointed out, pretty soon he'll need a knife and fork to eat the smoothie.

After the doctor, and the nutritionist, and the clinical study coordinator, we had a quick visit with the respiratory therapist to talk about getting Lemon fitted for his first vest.  The vest is basically a mechanical device that will take over the chest physical therapy that I've been doing manually since Lemon was diagnosed.  Over our next few visits, we'll get to look at the test models that they have at the clinic and make a decision about which brand to go with.  I learned that, much as realtors are not allowed to talk to you about the school districts in their town, the respiratory therapist is not allowed to tell you which brand of vest she thinks is best, even though she clearly has a preference.  It's so frustrating not to be able to tap into that knowledge--she's been working with vests for decades, but instead of my being able to access her expertise, I am supposed to visit the company's websites, and call their customer support line to talk to them, and make a decision based on that.  How does that make any sense?

After the respiratory therapist, we just had the nurse to do the throat culture, and then a quick set of chest x-rays.  Then home to relax and think about more ways to get calories into our child.  The timing is particularly bad, because he seems at long last almost ready to transition away from the smoothies that have been the staple of his diet for so long and on to more "adult" food.  So, not only do I have to think of new solid foods that he might want to eat, but I have to figure out how to get enough calories into those foods that he'll actually gain weight.  Because his weight gain was off, I only have 8 weeks (instead of 12) until his next clinic appointment to figure this out...and tonight he had a single raspberry for dinner.  So we're off to a great start!












 

Week 67: Set the plan to flexible

Ah, Tuesday.  It sounds so innocuous.  And yet, last Tuesday was a real zinger.  Lemon had his 18 month checkup, so I took the morning off work to go with him to the appointment.  We showed up on time, and we only wish the doctor had managed the same.  They were running way behind schedule for some reason, so I ended up having to entertain Lemon in the exam room for almost an hour and a half before we were finally seen.  The good news is that he is continuing to grow really well--his length and head circumference are right on track for his growth curve.  His weight fell off a tiny bit, probably due to running around like a maniac, but the doctor wasn't worried.  We got three shots and headed home. 

I dropped Lemon off and raced into work for a pointless meeting, then raced home again to finish all the last-minute preparations for our departure to Boston.  I got everything loaded into the car, and we headed off to the airport, picking up Papa Bear on our way. 

We went through security.

We even went so far as to board our aircraft.  Then we sat there parked at the gate for an eternity, finally learning that our plane had "mechanical issues."  We watched the chances for us to make our connection in Chicago gradually shrink from decent, to improbable, to zero, to "oh, our plane for Boston already left."  Eventually, we had to call home to say that we weren't going to make it, and then they let us get off the plane.

We were given the option to rebook to fly on Wednesday, but between the predicted storm on the East Coast, and our desire not to drag Lemon through multiple airports full of disease-carrying strangers on the heaviest travel day of the year, we decided we just couldn't risk it.  We were bitterly disappointed to miss the holiday back home, but there really was no other option.  So, as we say in our family, we "set the plan to flexible," and contemplated how we might spend our first Thanksgiving away from Boston.

I decided that I would make us a Thanksgiving dinner, and that my challenge to myself would be to use only ingredients that I already had on hand, to avoid the madness of grocery shopping on the day before the holiday.  Fortunately, my pantry is always well stocked--overstocked, some (Nona) might say.  But, hey, could you make a biscuit topped winter vegetable casserole, butternut squash gratin, roasted asparagus, garlic mashed potatoes, and a walnut bourbon pie based on what's in your house right now?  I rest my case--it's better to be prepared!

 Other than our big dinner, the weekend was fairly uneventful.  We took a hike in the front yard,

 Developed our art skills,

 And practiced sitting in a recliner.

The only other human being we saw the whole weekend was the realtor who helped us buy our house, who stopped by with a pumpkin pie.  In other words, it was basically the total antithesis of the big Thanksgiving in Boston.  Although we missed seeing all of our relatives, it was also unexpectedly wonderful to be home, just the three of us, for five days with no plans. 

Of course, just to keep things interesting, the cold Lemon had been dealing with for a week or so decided to turn into a really bad cough on Friday.  But, hey, we were home--so, we called the clinic, got him a prescription for antibiotics, and picked it up at our pharmacy without any problems.  He coughed all night Friday night and slept a lot during the day on Saturday, but is almost back to normal now.  So, overall, I would say our first Thanksgiving in Madison was a great, if unexpected, success.

Week 66: Billion with a B

It's hard to believe that tomorrow we're heading "home" to Boston for Thanksgiving.  Traveling with a child is one of those things that doesn't seem to get easier with practice.  Lemon's needs keep changing and we have to change to keep up.  Plus, I think in between each trip, we forget how much work the previous one was, and are shocked anew at how much stuff it takes to travel with a child.  This will also be our first plane trip since Lemon learned how to walk, which should put it in its own special category. 

It's also our first trip away from Wisconsin in the winter, so for the first time we've had to deal with things like "What do people who own houses do about clearing the snow when they go away?" and "Where do you get those timers that you plug the lights into to make it look like you're home?"  The second one is of course easy, amazon.com of course.  Which brings up a good point as you are thinking about spending a small fortune at amazon buying all your Christmas gifts this coming Cyber Monday.  If you start your purchase at smile.amazon.com, amazon will donate some very small percentage of the total value of your purchase to a charity of your choice--like the Cystic Fibrosis Foundation.  Costs you nothing and gives kids like Lemon more tomorrows, so why not?

The CF Foundation was actually in the news this week, after receiving a $3.3 billion (yes, billion with a B) payout from the sale of future royalty rights to the portfolio of CF drugs being developed by Vertex.  In what is now called "venture philanthropy," the CFF gave money to Vertex to finance the development of CF drugs, with the agreement that the CFF would get a share of the royalties on any drugs developed.  The first such drug, Kalydeco, is now on the market and many more exciting medicines are coming along in the pipeline.  Rather than wait for the royalties to trickle in over the next 20 years, the CFF sold the rights to the royalties to an investment firm so it could have access to all the cash right away.  The money can now be reinvested in further research, and the other services that the CFF provides to CF patients.  Although some have questioned the CFF's for possible conflict of interest(the cost of Kalydeco is currently $300,000/year, and the high price might be related to the high value of the royalties), my feeling is that this is pretty much a huge win for the CF community.  After all, what other rare disease right now has a $3.3 billion research budget?  I feel like if it's possible to buy enough research to find drugs for all CF patients, money won't be our limitation now.  So much progress has been made in the last decade, and I'm excited to see what this new bolus of funding will bring in the decade to come.

Week 65: Snow-vember

Ah, yes, mid-November in Wisconsin.  Doing a 12-mile training run at 24 degrees Farenheit.  Shoveling the driveway for the first time.  Seeing 9 degrees on the thermometer as we're leaving for work on a Monday morning.  Actually, I think I'm beginning to adapt to life here--after all, I did the training run, sort of enjoyed shoveling the driveway, and decided that if it was "only" 9F I didn't really need to find my hat, the hood on my jacket would be enough.  And, I'm complaining about the weather in that semi-ironic tone of voice that everyone here seems to use to discuss the climate of our beloved home state.  It turns out that spiked hot chocolate, a Badgers win, and a Packers win can do a lot to keep one feeling optimistic through an early cold snap.  On Wisconsin!

The thing that really made this cold snap special, though, was watching Lemon really react to snow for the first time.  Of course he saw it last winter, but he was too young to really comprehend it.  This past weekend, though, after we stuffed him into his snow suit and boots and opened the door, the shock, curiosity, and delight on his face was transparent.  He was hesitant to even step onto the snow at first, but after his first step he started running after me, laughing and pointing.  That lasted for a solid 10 minutes, at which point he made the discovery that snow is cold, and had to go inside to observe the snow from a safe vantage point.

I'm eager for the stage of cognitive development that allows him to understand that mittens are actually helpful, not just torture devices that unkind parents use to prevent their children from picking things up.  I'm also starting to wonder what we will do all winter, when we can't spend as much time outside.  Even when he does come to accept mittens, I'm figuring Lemon won't last for more than a half-hour outside most days. 

So, internet pals, what should I do with a very active toddler all winter long?  We have a music class and a gym class lined up, which accounts for about 2 of the 84 waking hours every week.  Our downstairs playroom is all set up, but I'm looking for ideas about what to do in the playroom that will be somewhat more stimulating for both toddler and parent than building and knocking down towers of blocks.  Even at only 3 blocks per tower, that's a lot of blocks between now and June...

Week 64: Reunion

This week we had a wonderful reunion of my nuclear family, as Opa and Uncle Jared came to spend a few days in Madison.  It does feel like a funny turn of events that here, Papa Bear and I are the ones with the house and the car, after so many years of being car-less apartment dwellers.  Opa even borrowed our car a few times.  Fortunately, he was responsible with it and always had it back by the agreed upon time.

Lemon got to do many of his favorite things with his doting relatives--reading

showing off his belly

swinging

having his staff keep tabs on his fantasy football roster

and bouncing with Opa.

Amidst all this excitement, Lemon is continuing to work hard on learning to talk, and his vocabulary now includes the phrase "all done," as well as preferred individual words "hi, bye, up, down, socks, shoes, thanks, please, more" and, of course, "no."  No sounds kind of like "naaay" which is, incidentally, what the horse says.  And the cow, and the sheep, and the truck.  We're still working on that one.