I will post pictures of Lucy’s birthday party (it was great) and all the other hoopla that went along with it soon (she had been waiting for that birthday for 364 days, so it was fun to finally get there).  But for now, I want to keep current with what’s going while it’s fresh in my mind. 
Because on her very birthday (Tuesday) Dave and I packed her up and came to Wisconsin for a whole slew of Dr. appointments.  
(let’s just go ahead and excuse all these iPhone pics right here and now, ok?  and also the fact 
that I’m a little deliriously tired right now so I may not make a whole bunch of sense)
Super fun birthday, right?  But it was the only time we could do this so we have made it into a “special birthday trip” (which trip-title she has taken to hook, line and sinker…except for the blood draw yesterday and some complaining at the fifth doctor appointment of the day).  
This one awesome Nephrologist (Dr. Haws) decided out of the good of his own heart after getting to know some BBS patients to start a clinic for BBS families.  A clinic where doctors would know what in the world BBS is, first of all (do you know how velvety great that is? it is amazing I tell you!), and also so that that group of specialists could work together to combat the issues involved with this syndrome.  This is the second session they have put together, and we were very lucky that they were able to squeeze us in.  
Yesterday was our first of three days booked with back-to-back appointments. Lucy has been a little dreamboat of a girl.  It’s so fun to compare this trip to when we took her to the National Institutes of Health (back here) for a similar trip where she screamed pretty much from the time we arrived until we left.  Today we saw Ophthalmology:


(Lucy was over the moon to be given this stuffed bear since she left Rainbow Dash and Ariel at home and HAS to sleep with a stuffed animal…)



and Physical Medicine:

When they realized how angled out and flat Lucy’s left foot is they even worked her in to the orthotics department where they casted her for a new orthotic that will be done before we leave on Friday to try to fix that issue.  

Can I just say how amazingly grateful I am for that?  To get everything taken care of for that poor foot right here, right now, not jam-packed in the middle of two carpools or trying to get cabinets installed the right way?  

So far it has been so reassuring that Lucy seems to be very highly functioning for having BBS (which we have always been so grateful for).  But there are also so many things brought up that make us worry and need to be even more aware of.  Just a good wake-up call all around of things to be extra aware of.
I must pause to say Wisconsin is gorgeous.

And to say that Lu is a kind of fun travel companion.

 …so’s this guy:

I have missed Fall the last couple years (it’s just not the same in the desert).  So it does something deeply good to my heart to see this:

 Believe me, it is SOOOOO much more gorgeous in person than what my iPhone can capture.

This is the road leading to this amazing clinic:

For reals.  It is in the middle of nowhere.

And I love it.

We finally arrived (had to drive three hours from Minneapolis) and met the other families (there are five other BBS families here we are looking forward to getting to know better).  Dr. Haws was here to greet us with a birthday gift for Lucy.

Sure way to win Lu over: give her something that has to do with Ariel.

This is our view from our hotel window:

Here’s Lu’s journal entry from her birthday:

All those “by”‘s are really supposed to be “bye”s.
Our traditional “birthday pictures” were a little different this year…

Love this girl.

Who knew this girl could be such a fun travel companion after hours on end of bawling in the car for so many years?
We took her to Applebees to celebrate her first day of doctor apts. under her belt (the biggest and best for this town) and soaked her in as she told us every word she could think of that starts with “A” with her Nanny McPhee smile.
I am going to take notes each day on the “I Love Lucy” blog over HERE (yes, the one that has been so sadly neglected for a loooooong time).  I need to write things down while they’re fresh in my mind and I know there are a lot of other BBS families who will be interested in what we learn.  Day #1 is here (in garbled, tired talk 🙂

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  1. I'm far away in France, but today every time I'll see a tree losing its pretty brown and red leafs, I'll think of you. You're such a brave family, I'm sure good things are coming.

    Joyeux anniversaire Lu !

  2. I'm from that part of Wisconsin and the weather there this time of year is beautiful! I never make it back early enough to see the trees 🙁 those are great pictures!

    My dad was a doctor for that hospital about 10 years ago… she's in good hands 🙂 Happy Birthday Lucy!!

  3. Best wishes for a productive trip and a happy birthday to Lucy.

    I'm a long time reader and was pleasantly surprised to hear you're in my neck of the woods. If you need anything – suggestions for good places to eat, fall sights to see, etc – let me know! 🙂

  4. Despite the fact that Lucy had all the doctor appointments, I'm glad you got to see Wisconsin's fall colors (or the start of them not real sure where exactly you were but that's not the point)

    Since I live in Wisconsin, it always warms my heart to hear that when people visit they usually enjoy their stay.

    Happy Birthday Lucy!!

  5. Love seeing the pictures and I'll check out the other blog for more info. I'm a little envious because we were scheduled to be there at the clinic this time too but had to cancel because of Nate's travel schedule. I hope you have a great time and learn lots!!

  6. My oldest child has a genetic illness that is far more common than BBS, but it was still a relief to us when we moved to a place that had a designated specialty center where she could be seen & treated by people who really understood. Yay for this one for BBS!

  7. Happy Birthday, Lucy! I am so impressed with her reading (big ol' chapter book) and her writing. I have a 6 year old who is also a first grader so I know what a great job she is doing!
    So glad you are able to have a great place to help Lucy! Prayers for your family!

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