Monday, November 11, 2013

Week 12: Home is where the heart is

In addition to everything else that's been going on in our lives, before Lemon was born, we decided to relocate from Boston to Madison, WI.  We'd both been offered really good jobs there and felt like it was time to try something new after nearly two decades in Boston.  This week, we went out to Madison to look for a place to live and sort out a few other details of our new lives before the big move in January.

This was our first time flying with Lemon, so we were a little nervous about how everything would go, and how we would manage the giant pile of luggage that an infant seems to require.  Luckily for us, we were "randomly" selected for TSA-pre at Logan, meaning we were allowed to leave our jackets and shoes on, and leave our laptops and liquids inside our carry-on bags.  The flights themselves went very smoothly, much to our surprise and the suprise of our fellow passengers, who looked at us with fear in their eyes as we were boarding, but after the flight complimented us on what a good baby Lemon is.

Our housing search ended up being relatively straightforward.  We looked at a bunch of houses on Thursday, went back for a second look at our favorite on Friday afternoon, put in an offer on Friday evening, and had the offer accepted on Saturday.  Somehow we forgot to take a single picture of our new house, so I'll have to save that for January.

Nona commented that Papa Bear and I seemed extraordinarily calm throughout the whole home-buying process. We had done a lot of research before we left, which certainly helped.  At least for me, though, buying a house was just another material purchase.  Yes, it's a lot of money, but in the context of having a baby with a serious diagnosis, it honestly just doesn't seem like that big a deal.  It's a very nice house in a nice neighborhood, so I'm sure we'll like it, but if we change our minds at any time, we can sell it and move on.  If only we could cure CF that easily.

Another highlight of the trip was meeting Lemon's new CF specialist.  He was recommended to us by Lemon's current team at Children's, and seems like a good fit for our family.  It was interesting that in just our 30 minute meeting with him (just a meeting, not a clinical visit), many differences came out in terms of the standards of care applied at Children's as compared to Madison.  Most strikingly, they seem to be much more relaxed about infection control measures in Madison--unlike Children's, they do have a waiting room, and the CF care team doesn't put on fresh gowns before going into the exam room with a CF patient.  According to our doctor, Children's in Boston started doing that after they had some "bad outcomes."  Which makes me wonder--is it right for Madison just to wait and see if they have any "bad outcomes" before they switch to the more rigorous procedures?  They also use higher enzyme dosages, and tend not to use Synegis (an antibody shot that protects against respiratory syncytial virus) that was pushed pretty hard by our team at Children's. 

It's so hard as a patient to know what the right course is for any of the CF treatments.  I even did a quick literature search on the enzyme dosages, just because I was curious, and it seems like the reason there are differences between centers is that the research just isn't that clear about what's best, so each center tries to find its own way.  Boston seems to like to dose at the low end of the published range, whereas Madison goes about 3 times higher.  Madison does seem to have better outcomes in terms of BMI, so maybe they are on the right track, but it's so hard to tell.  As a patient it would be comforting to believe that the doctors have all the answers, but especially for a rare and complicated disease like CF, that simply isn't true.  Everyone is trying to do their best with relatively limited information, and to adjust the care to each individual patient. 

With the house and the CF doctor taken care of, we had some time left over to get into the true spirit of Madison.  We bonded with Nona and Opa over the Badgers-BYU football game, which had the entire town full of enthusiastic alumni, all wearing red (we found out that UW Madison has 400,000 living alumni!).

Papa Bear also took advantage of the opportunity to make friends with our new mascot.
It's hard to believe that this move is less than 2 months away--19 years in Boston draw to a close.

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