Monday, November 24, 2014

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, 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, 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.

Monday, November 17, 2014

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...

Monday, November 10, 2014

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


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.

Monday, November 3, 2014

Week 63: Mind control

This week marked Lemon's second Halloween.  We observed it with about as much fanfare as his first--his "costume" was a hand-me-down jacket from a friend, so we joked that he was going trick-or-treating as "Elliot."  We went across the street to our neighbor's house to say hello before heading home so Lemon could go to bed at his usual time.  Now of course we're in that painful period immediately following setting the clocks back where Lemon claims to have no knowledge or understanding of the subject and persists in getting up at what is now 4:30 or 5 a.m.  So, Papa Bear and I still have the joy of being awake for an hour or two before sunrise, just like before.  Except now it gets dark at 4:30pm as well.  Awesome!

On Saturday we went to our clinic's annual CF Family Education Day.  It was great.  There was a video presentation from a lawyer who specializes in issues faced by people with CF, like accessing federal and state benefits and dealing with health insurance companies.  She has CF herself, and it was really moving to hear the emotion in her voice as she described her decision to leave a high-power/high-pressure career in a prestigious law firm to start her own law practice to focus on these issues.  Honestly I hope never to be in the need of her services, but it feels good to know that there is someone as dedicated as she is out there if we do.

There was also a really fascinating talk about how to get your kid to eat more, which if you have a kid with CF is a pressing issue at all times.  The speaker pointed out that these early years are especially critical, and how well a child is doing at age 4 is very predictive of how well they'll be doing at age 18.  Of course, the years before 4 are especially difficult, too, because it's impossible to use rational arguments to convince really young kids to eat.  Fortunately, our speaker (Scott Powers from University of Cincinnati) is an expert in child psychology and has developed a proven method that can get young kids with CF to eat an extra 500-1000 calories per day.

The premise of the method is that the most important reward for a young child is adult attention.  So, when do most parents give their kid attention during a meal?  When he's _not_ eating.  That's when parents come in with all kinds of strategies like coaxing the kid to eat, threatening him with a consequence if he doesn't eat, and so forth.  So, the kid learns that the parent pays attention when he's not eating or playing with his food, and that's what he does.  Dr. Powers recommends flipping the whole scenario around--praising the kid when he is eating, and ignoring him when he's exhibiting any undesired behaviors.  That way, the kid will learn that in order to get your attention during a meal, he actually has to be doing what he's supposed to be there to do.

We were really impressed by the results that Dr. Powers had achieved in his clinical trial, and tried right away to start implementing them at home.  He'd warned the audience that you will feel slightly crazy when you start implementing this plan, and it does feel pretty ridiculous to be sitting at the kitchen table saying "I really like the way you're drinking that smoothie right now.  That was an excellent bite of cracker."  The key, according to Powers, is just to shut of your self-conscious instincts and keep up the chatter while the kid is doing what you want, and being really diligent about ignoring them when they lose focus on the meal, even if they are trying desperately to regain your attention.  That, combined with even more strategies to boost the calories in the food, and you can get even a kid as small as Lemon up to 1200-1500 calories a day (pretty impressive, given that's as much as many adults who are five times Lemon's size eat!). 

Dr. Powers pro tip: the strategy works on spouses, too!  Give it a try and let me know how that works out for you...