Week 53: Year 2 begins

The passing of a birthday in the life of a child is often marked by a visit to the doctor, and in our family we get double the fun with a visit to the CF clinic also.  The regular pediatrician was up to her usual tricks, asking us lots of weird questions about Lemon's social development (is he pointing at things, does he say any words, etc) and telling us that she's willing to "let it go to 15 months and see what happens."  This about a child who was absolutely transfixed by the medical student who was working with the doctor that day--a dark haired female, his favorite kind--and spend the entire appointment staring fixedly at her face, laughing, clapping, waving, and making every sound he is capable of, trying to hold her attention.  The pediatrician also asked with a chuckle about the note in Lemon's file recommending 2 cans of Pediasure per day.  She knew that wasn't going to work out!  Nonetheless she was really happy with Lemon's continued growth, hit us with three immunizations, and essentially told us to keep on keepin' on.

Friday we hit the CF clinic.  Not much to report there other than that we had the double joy of a throat culture and a blood draw in the same visit.  They're running tests for a bunch of things including iron and vitamin D levels, results pending.  He needs to gain about another 2 pounds before we can go up on his enzyme dose again, and now that he's one we "graduate" to only going to the CF clinic once every three months, as long as things are going well.

Finally, late Friday night, our guests of honor for the weekend, Uncle Jared and Auntie Lauren arrived.  Because Lauren is a charming dark haired female, Lemon was immediately captivated by her and pretty much spend the entire weekend trying to impress her.

"Look, I can hand you my giraffe!"














"Look, I can often resist the temptation to play with the cat food!"

"Look, I can push this little cart!"

And on and on.  Being a tall bearded man with a deep voice, Lemon was far more cautious about Uncle Jared.

"Please put me down so I can find Auntie Lauren!"

A major highlight of  our trip was the official observation of Lemon and Nona's birthdays (one day apart).  Nona made her official debut on the ukelele, summoning forth a lively version of "Happy Birthday."  Everyone including Lemon was quite impressed!

 And, just because I love it, here's our version of a "belfie" (photo of yourself and your boy):

Week 52: We are one

Of course we wanted the last week of Lemon's official babyhood to be a memorable one.  In retrospect, slightly less memorable would have been OK too, but that wasn't in the cards.  As you loyal readers will recall, as of last writing Lemon had come down with a fever, which we ascribed to some pretty serious teething action.  Fortunately, by Wednesday, the fever had more or less vanished, but unfortunately, Lemon didn't seem to be feeling any better.  Then, Thursday morning the rash appeared.  Yup.  Roseola.  The rash and the lack of appetite hung around until Saturday--just enough time to put a noticeable dent in his weight gain in advance of his one year appointments at the CF clinic and the pediatrician.  Oh, right, and at the pediatrician he'll be getting a slew of 12-month vaccines, so next week will likely also be off in terms of eating, but I'm getting ahead of myself.

So, by Friday, the roseola was starting to fade, and I was getting my gear in order for a half marathon early Saturday morning.  I got up at 5:30, ate a quick breakfast, and biked over to the start of the race.  I turned in a time of 2:01:40, which I was quite happy with.  I probably had an even faster time in my legs, but given what lay ahead, I knew I had to be fairly functional for the rest of the weekend.  Lemon and Papa Bear came out to watch the race which was wonderful--they saw me although I was so in the zone that I didn't see them. 

I was back home by 10, took a shower, and hopped back on the bike for a ride over to the farmer's market to pick up a ton of fresh produce for our housewarming party.  Yes, in the same weekend as a race.  Next time I announce plans to do something like this, please do go ahead and schedule that intervention.

Back home from the farmer's market, lunch, etc, then in the car and off to Costco for the rest of the party supplies.  Back home for a ton of party prep and baby care.  I did go to bed at 8 which felt luxurious.  Then Sunday morning we were back at it with keeping Lemon amused and getting ready for our party.  I think it came together really nicely--someone asked me if it was professionally catered, which was flattering.  It was fun to finally have a bunch of people over at our house since we are still feeling a little isolated here.  Basically everyone we know in Madison, which amounts to something like 30 all told, showed up for all things local (produce, beer from two different local breweries, wine from last weekend's winery, cheese from a local farm, and of course local muskmelon which is really heaven on earth).  Lemon was taking a nap when the party started so you can imagine his shock when he woke up and there were 30 people in his house.  It was really one of the most exciting days of his life, there were so many other kids here for him to play with and watch.  The party wrapped at around 5:30, Lemon was in bed by 6:30 and Papa Bear and I got the house back in order and then followed suit.












That pretty much brings us up to the present moment, the eve of Lemon's first birthday.  What a year it's been.  This week brought a few more important milestones, including Lemon's very first mini-excursion in the bike trailer (not a fan of the helmet) which I hope is a prelude to many longer outings in the years to come.












Also, after a year of cohabitation, Lemon seems to finally have earned the trust of our cats.

This year has been the biggest roller coaster of my life, with some of the highest highs and  also the lowest lows.  I wasn't sure at all what to expect motherhood to be like; certainly nothing like it is.  It is both harder and more wonderful than I could ever have imagined. 

I can barely recall what my life was like before I had Lemon, before the care of a child and the obsession with cystic fibrosis took over everything.  One thing I do recall very strongly from my past life is my friends and family.  Most of you are much farther away now, but we still feel your presence every day.  You have clicked on our blog 11,865 times, you have helped us raise over $10,000 to fight the disease that we are working so desperately to keep at bay, you have called, texted, emailed, and visited when we needed you most.  So thank you.  We are looking forward to next year, whatever it brings.

Happy, happy birthday, Lemon!

Week 51: Two on the bottom

We had a wonderful week this week, featuring a special visit from one of my oldest and dearest friends.  She and I haven't lived in the same place for a very long time, but after over two decades of friendship, it's pretty easy to pick up right where you left off.  Lemon and I met her at the train station, where Lemon got to experience the rush of a freight train going by just 20 feet away.  Then, we did all sorts of fun things including a trip to a beautiful local winery (yes, you read that correctly, a local winery here in Wisconsin) where we did a tasting and took in some lovely scenery.  Lemon particularly admired the gravel.

We also hit the iconic Memorial Union, where you can eat local ice cream and drink local beer with a view of Lake Mendota.  Lemon really could have cared less about the refreshments or the view, however, because while we were there, he discovered his latest obsession: stairs.  I suppose I shouldn't be surprised that a child who got half his genes from my side of the family would be immediately addicted to climbing things.

In addition to the stairs, Lemon has finally figured out how to push his trusty cart, preferably in the uphill direction.

The last couple of days, Lemon has been a little grumpy and feverish as he's leaving one of my favorite developmental stages behind.  I refer, of course, to the six-toothed stage (four on top, two on the bottom).  He has two more teeth that have almost broken through on the bottom, and for the trouble his mouth is giving him at the moment it seems the rest of his baby teeth can't be far behind.  Of course I'm thrilled by all this progress, but some small part of me is reluctant to say goodbye to babyhood--it went by so fast, and I can't believe there are only 8 more days of it! 

Week 50: Getting close

Well, we managed to survive an entire week in Madison without Nona (barely!).  Our hard-working nanny definitely bore the brunt of it, although Papa Bear deserves kudos for taking on a solid 4-hour block of time as a single dad. 

I feel like Lemon is a little cranky lately, as he is on the cusp of being able to do so many things that he wants to be able to do: say an intelligible word, stand unsupported, and walk.  He did achieve one very important developmental milestone, though: he figured out how to turn his ball popper on all by himself.  That is, he definitely knows that the button makes it turn on.  He can't reliably push it yet, though--sometimes he squeezes it, sometimes he pulls on it, and sometimes he pushes but not hard enough.  So, even that new skill is a source of frustration.

Nonetheless, we're having a lot of fun.  One of Lemon's favorite new activities is riding in the grocery cart when we go shopping.  I know it doesn't look like it in this particular photo, but you'll just have to trust me that he was taking a short break from shrieking with glee when we managed to get the camera out and aimed in the right direction.

Another favorite thing (and source of tension) is Lemon's little climbing structure in our front yard.  He wants to be able to do the whole thing himself but isn't quite there yet, and doesn't know to lift his feet on the slide to let himself slide down.  Still, with a little help, he can manage it.

 We went on one of our first family social calls on Sunday evening, to dinner at our next door
neighbor's.  For the occasion, Lemon wore his first ever button down shirt with a collar, and staying true to the Hawaiian theme, went barefoot.  We had a nice if brief visit with them--a 7pm bed time isn't exactly conducive to a vibrant social life!  
 

Week 49: Summer in Mad City

This week's highlight was a visit from Opa.  Usually, visits from Opa are accompanied by a ton of lovely pictures.  Unfortunately, he left for a little much-deserved vacation with Nona "up North" (as they say around here) without uploading them, so we'll have to make do with a few shots from Papa Bear's phone.

We did a lot of fun things with Nona and Opa, including hanging Lemon's new swing in our front yard, visiting the botanical gardens again, and going out for a couple of nice meals.

Summer here in our new home of Wisconsin is really lovely, although of course we're told that this summer isn't typical.  Weather not being "typical" is the norm here, apparently.  Nonetheless, we've been enjoying the mild temperatures during the day and the cool breezes at night.

One of the things I've been thinking about a lot these last few days is lakes (of which Madison has an abundance) and whether Lemon will ever be allowed to swim in them.  The recent CF Infection Control and Prevention Guidelines say that CF patients can swim in chlorinated swimming pools, but that they should definitely avoid hot tubs and saunas, where bacteria could grow.  For lakes, though, all they say is "There is insufficient evidence at the time of publication of this document for the CF Foundation to recommend for or against people with CF avoiding activities in natural bodies
of water that are not stagnant (eg, ocean, ponds, and hot springs)."  I find that a little funny since I've always thought of ponds as fairly stagnant, but maybe my impression of ponds has been permanently altered by the one I swam in as a kid, that gave me swimmer's ear multiple times every summer. 

I wonder how we'll deal with this as Lemon gets older.  This summer, and probably the next several, it will be easy enough to keep Lemon out of the lakes.  But, as he gets older and his friends start wanting to go swimming in the lakes, or go out in paddle boats and canoes, then what?  The lakes are so central to life here.  It has always been my goal for him to have as normal a childhood as possible, without having to feel like he is different than his peers.  But is it worth preserving that at the risk of picking up an infection from the lake?  How big is the risk? 

There are some other summertime activities that Lemon also will never be able to partake in, which he will probably come to view as a distinct bonus of his condition: no lawn mowing, and no cleaning out stables or chicken coops!

Week 48: Turn it up to 11

Another month has flow by, and Lemon entered the last month of his first year this week.  I really don't see how this is possible, but the calendar assures me that it's true.  And it does seem that he's starting to look more and more like a little boy and less like a baby.

 

Over the weekend, we decided to go all out on introducing Lemon to new animals.  Since we are raising Lemon in a big agricultural state, we want to be sure that he gets off to the right start in his cultural immersion program.  On Saturday, we hit the Dane County Fair, which had an abundance of farm animals of all sizes, including a kiddie farm with baby animals that you could get good and close to: 

goats,














piglets,

 

and chickens















(along with cows, horses, goats, llamas, alpacas, rabbits, ducks, pigs, and who knows what else).  I tried not to worry about the particulates in the air or the germs from the animals and just have a good time.  Lemon certainly enjoyed it.  We posed for a few more pictures, and then had to head home because Lemon was so worn out by the experience that he needed an extra nap.

Then on Sunday we went to the zoo.  We've gone several times before, but until this point, Lemon hasn't really been that interested in the animals, I think because he didn't identify them as living things and couldn't understand why we were so excited to stare at what looked like vast blank spaces.  This time, though, he totally got it and was looking right at all the animals.  By far the highlight, though, was his first ride on a carousel.  I wasn't sure how he'd react but he was squeaking in delight the entire time and actually started to cry when the ride ended.  Thus begins my long career of taking Lemon on rides while Papa Bear waits in the shade with the camera...
  

I'm sticking to my guns about trying to get Lemon to gain more weight without the benefits of Pediasure, so we're trying to expand and vary his diet of solid foods even more.  I think teaching a human being to eat on his own is the single messiest undertaking of all time.  Even though Lemon has 6 teeth, he's still not really sure how to use them and definitely still prefers pureed foods.  We finally found one or two things that he will pick up and stick in his mouth (or at least the part of his head closest to his mouth), but there's a lot of room for improvement.  His manual dexterity isn't quite where it needs to be to actually get his fingers out of the way so that the food can get from his hand into his mouth.  But, once he gets going with trying to feed himself, it's hard to then get him to take something off the spoon.  And then he gets avocado in his eyebrow.  We're doing a lot of after dinner baths these days...

Week 47: Questions

You'd think after nearly a year of being a CF Mama, I would no longer be surprised by new challenges with caring for Lemon. But, at this week's clinic I got thrown for a bit of a loop.

So, what's throwing me for a loop this week? Pediasure.  It's a high-calorie drink/shake thing that is supposed to help underweight kids gain weight.  At Lemon's check-up this week, we learned that he is gaining an average of 10 grams/day, which is exactly how much a baby of his age should be gaining, and he's right on his growth curve.  But, the nutritionist set an aspirational goal of 20 grams/day, so that he would make up some ground in terms of his weight-for-length.  He's not scrawny by any means, but he isn't quite at the 50th percentile for BMI like they want him to be.  So, she recommended that we try to get two 8-oz containers of Pediasure into him every day.  She gave us samples in a variety of flavors, and said we could request more of his favorite flavor once we'd figured out what that is.  So, I took the samples home with every intention of following her instructions.

Then I read the label.  The first three ingredients are: water, sugar, and corn maltodextrin.  One bottle of Pediasure has as much sugar as a two-pack of Reese's peanut butter cups, 50% more total carbohydrates (ie that corn maltodextrin, which is just a bunch of glucose molecules linked together, basically more sugar), and about the same number of calories.  Actually, they are more or less nutritionally equivalent, except that the Pediasure is vitamin fortified.  Also, Reese's peanut butter cups have the distinct advantage of being palatable, rather than tasting like overly sweetened chalk.

Now, I'm wondering how to square everyone's recommendations that you limit your kid's intake of refined sugar with the nutritionist's recommendation to essentially give my 19 lb kid the equivalent of four Reese's peanut butter cups every day on top of his regular diet.  I'm thinking that CF comes with a high risk of diabetes anyhow, and thus how can it make sense to pump my kid full of sugar now, which will just put more metabolic stress on him, and also give him a taste for overly sweetened things that will probably be hard to break later? Also, if he is staying on his growth curve with the way he is eating already, isn't that good enough for now?  His activity level went way up in the past couple of months, so the fact that he's eating enough to keep up with his growth plus all that motion on his wonky digestive system is a major accomplishment.  Never mind the fact that on his thirstiest day he drinks maybe 6 oz of liquid (he may be a lizard, we're not sure).

In the mean time, I'm leaving the Pediasure on the shelf and will try to come up with even more ways to sneak nutritious calories (not pure sugar) into my child.  Fortunately, he is turning one soon and has some teeth, which opens a lot of new doors in terms of food possibilities.