Monday, September 29, 2014

Week 58: In motion

This was a big week for physical activity.  Lemon finally figured out how to really walk unsupported, after lots of smaller attempts of a few steps each.  One morning he woke up and decided that he could do it now, and he's barely sat still (or crawled) since. 

Just in time for this major milestone, my dear friend and long-time cycling buddy Pamela came to town for a visit.  Thanks to tremendous support from Nona and Papa Bear, I was able to get out and relive my old, pre-Lemon life for a few days, and see some of the glorious countryside around where we live.  As I'd been told (and remembered from my cross-country cycling jaunts) Wisconsin is a grand place for road riding.  The weather cooperated beyond our wildest dreams, sunny and nearly 80 degrees every day--actually one of the best stretches of weather we've had all summer!  We climbed a surprising number of hills, ate some great food, caught up on many months worth of friendship, and thoroughly enjoyed ourselves.

 I'll just include a few pictures of scenery to give you all a sense of what you're missing, and remind you that none of these vistas are more than 25 miles from our house!

I definitely miss my old life, where a weekend riding like this was the routine rather than a rarity.  I miss being as fit as I was, and having as much time to pursue my passions as I did.  But, as Pamela rightly points out, I have a good life now, too--very different than what I used to have, but wonderful in ways that I couldn't have imagined before.  And it is encouraging to see Lemon growing more independent (at least in his mind) every day, and knowing that all this scenery will be out there waiting for me when I am ready to reclaim it.

Monday, September 22, 2014

Week 57: Taking care

This week, I have been thinking a lot about child care.  That shouldn't come as a tremendous surprise, I suppose--I am a working mom, and what working mom (or non-working mom, for that matter) doesn't spend some amount of time thinking about child care?  This week, it's been the attitude of several consecutive people about my child care arrangements that has really caught my attention.

At my job, I'm constantly meeting new people within our organization.  One of the first things they often ask me is whether or not I have any children (I'm going to skip the whole discussion of whether or not that's even an appropriate question to ask, and whether they would ask it of a male coworker in the same situation).  When I say yes, I have a son who just turned one, the next question inevitably is "Does he go to daycare?"  My answer to that is something along the lines of "No, he stays at home."  And, as far as I'm concerned, for a discussion in a professional situation, that is really more than enough.

But, a surprising amount of the time, people want to know more about this mysterious concept of the child staying at home while I'm not there.  Even more surprisingly, a lot of the time they go on to compare this arrangement unfavorably to a daycare center.  I've had multiple people tell me how I'm not doing my child any favors by preventing him from being exposed to the gamut of childhood illnesses by keeping him at home.  It's as though I'm spoiling him or failing to be sufficiently tough.  What places these (mostly male, mostly older) colleagues in a position to judge my childcare arrangements is a little beyond me, but clearly it's happened enough times to get under my skin.

I think I would find the whole thing absurd even if Lemon didn't have CF, but I find it all the more absurd since he does (a fact I don't generally share with my coworkers).  If I were a stay at home mom, would people tell me that I should put my kid in daycare for a few hours a day so that he could have the benefit of a bunch of colds and ear infections?

It's not like I don't understand where they're coming from--it is true that in order to become immune to things, you have to be exposed to them (see vaccination, which everyone should do).  So it is true that Lemon will be several years old before he is exposed to some things that other kids got in daycare.  And I am totally OK with that.  A person's immune system continues to mature and strengthen at least through elementary school age.  So, something that might have made Lemon really sick when he was 6 months old might just be a mild cold when he is 3 years old and his immune system is able to combat it more effectively.  Will he have more colds when he is 3 than is preschool classmates who went to daycare as infants?  Probably, but our bet is that he will be better able to handle them the older he is.  And, given the number of stay at home moms here in Madison, he won't be alone in having colds when he's 3.

Every family makes their own choices about child care, and those choices are among the hardest that families with young children have to make.  I am not advocating for our system over another; raising kids takes a team and who the members of that team are, where they are located and how they are compensated is something every family has to constantly define and adjust.  All I am saying is that our system works for us.  And I really wish people exercised a little more restraint in critiquing other people's child care choices, especially in the face of incomplete information.  Colleagues--I'm here at work without my kid, ready to get the job done.  So, let's focus our energy on that, shall we?

Monday, September 15, 2014

Week 56: All fall

This week we enjoyed a visit from one of my old cycling pals from Boston.  He lives in Oregon now, but his work with a bike company brought him to Madison, complete with a slick company car and the perfect hostess gift (future visitors take note!).  Lemon was quite suspicious of him, because he had a beard, but it was great to reconnect with the cycling community a little bit.  It's been strange to have cycling be so absent from my life after it was such a big part for so long.  I will return to it some day, I hope!

The other major highlight of the week was Lemon's first apple picking adventure.  We went to an orchard about 20 minutes from our house, which is basically the middle of nowhere.  It was a glorious fall day, and we did all the glorious fall things:

Looking at chickens

Tasting apples

Tasting pumpkin doughnuts (basically the only reason we could convince Papa Bear to come with us on this outing)

Going on a hayride

 Looking at pumpkins

 Fall is my favorite season of the year, and it seems to be every bit as glorious in Wisconsin as it is "back home" in New England.  This year, though, I face it with a bit more trepidation than I have in the past.  Fall is the season of pumpkins and apples and color, but it also is the beginning of the season of contagious disease.  The students (and whatever pestilence they harbor) are back on campus.  A serious respiratory virus is making its rounds in the midwest and in other parts of the country, sending hundreds of otherwise healthy kids to the hospital because they can't breathe.  People are coughing and sniffling and sneezing all around.  There doesn't seem to be enough Purell and flu shots in the universe to save us from all this.

I can't raise Lemon in a bubble, nor do I want to.  But the drive to protect him from all of these things is strong since I know the cost to him of he getting sick is so high.  It's a tough balance, especially with an increasingly mobile, curious, and willful little boy who is emphatically not a baby anymore (at least in his mind).  We take things one day and one action at a time.  Here's hoping that fall, and the winter that is coming all too soon, are beautiful, serene, and most importantly, healthy.

Monday, September 8, 2014

Week 55: Big city visitors

This weekend, we had a wonderful visit with Grandma and Grandpa.  They flew in from New York on Friday afternoon, and as soon as they arrived, Lemon got right down to business, showing them what a typical weekday afternoon is like here at our house in Madison.  Preferred activities include swinging and pushing one's cart up and down the driveway.

As the weekend went on, we hit a number of other highlights, including playing with the crayon mobile, looking at various plastic objects, reading books, and of course, napping (not pictured).  We pull out all the stops when we have big-city visitors to impress!

Overall it was a wonderful visit and Lemon got a big kick out of having two more adults around the house to amuse him.  The visit unfortunately had to be short, so we packed Grandma and Grandpa off to the airport on Sunday afternoon, and Lemon had to sleep for most of today to recover from all the excitement.

We did do an important deed for science today, though.  As many of you know, Lemon has been enrolled in a scientific study since he was born, looking at how nutrition during infancy impacts long-term health in people with CF.  Since he just turned 1, we had to do a detailed food diary for 3 days, recording every single thing he ate so that the nutritionist could calculate exactly how many calories and how much of various nutrients he was eating.  Also as part of the study, we were asked to mail in a little sample of the ultimate outcome of Lemon's digestive process for analysis.  I finally got around to that this morning.  Sorry, Mr. Mailman!  I hope I sealed that jar tightly!

Monday, September 1, 2014

Week 54: Six steps closer

The biggest news by far this week is that Lemon took his first few unsupported steps on Sunday afternoon.  I was out for frozen custard with a friend, and something caught his eye across the seating area.  Like Wile E. Coyote, he did just fine until he looked at his feet and realized what was going on, at which point he promptly sat down and hasn't walked an unsupported step since, despite significant parental encouragement.  So, unfortunately, Papa Bear hasn't witnessed this new milestone yet, but hopefully soon Lemon will have enough confidence to perform his new trick on a regular basis.  Yes, video to follow!
This week, we also got back the results of all the various bloodwork that Lemon had done at his one year checkup.  Overall, things are pretty good.  His liver enzymes are a little high, but that is pretty normal for a kid with CF.  His vitamins A and E, two of the vitamins in his delicious AquADEKs, were at the high end of the normal range, which is great.  Vitamin D, on the other hand, not so much.  He's still just below the low end of the normal range. 

So, now we're supposed to give him 2mL/day of the AquADEKs, and a further 3mL of D-Vi-Sol (the regular infant vitamin D drops) for a total of five times the normal dose for a kid his age.  For anyone who's counting, that's a pretty large volume of vitamins for a little guy.  Luckily he's still in a pretty compliant developmental stage.  We also learned that his iron is a little low.  He's not anemic but definitely at the low end of the normal range.  We've introduced spinach and yet another delicious vitamin (Fer-In-Sol) which are by far the nastiest tasting of the lot if you asked me. 

Other than those little things, all seems to be well with Lemon physically.  He's sticking to his growth curve in more or less the 25th percentile, and his nutritionist conceded that maybe her idea of having him really bulk up by drinking two cans a day of Pediasure was unrealistic.  His throat culture was normal again, phew.  So, we'll just keep on keeping on for the moment.  He has to gain about another kilogram before his enzymes will need to be adjusted again, and we're hoping he'll achieve that by his next doctor's visit, auspiciously scheduled for Halloween. 

In the mean time we're gearing up for a very special weekend next weekend--a belated birthday visit from Grandma C and Grandpa D, coming in all the way from New York City.  I'm sure if Lemon were capable of comprehending it, he'd be very excited!