Monday, July 28, 2014

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!

Monday, July 21, 2014

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: 




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...

Monday, July 14, 2014

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.


Monday, July 7, 2014

Week 46: Home again

We just returned from five utterly marvelous days in Boston.  I now find myself in the awkward situation of having two hometowns--Madison, which is where our house, all our stuff, and our new daily routines are; and Boston, where we have so many dear, dear friends and family members.

Given that we have been in transit for the last 8 hours and I still have to get ready to go to work tomorrow, this will be one of those heavy on pictures, light on words kinds of posts.

We discovered many important things on this trip, such as:

Lemon makes Elizabeth look tan.

Auntie Lauren is lots of fun.

Alex will do anything to make a baby laugh.

A few new friends are on the way.
Papa Bear will need to dust off his chess skills if he wants to compete with Cousin Idan.

 Great Uncle Joel is a little crazy but plays a mean ukelele.

Mama Bear can still ride a bike and almost keep up with Pamela.

We have a such a great family!