On Lucy’s very birthday, Dave and I packed her up and flew to Wisconsin for a whole slew of doctor appointments at the Marshfield Clinic. A unique BBS clinic run by the remarkable Dr. Haws, where doctors actually know what Bardet-Biedl Syndrome is and a team of specialists works together to address everything involved. This visit ended up being one of the most important turning points in our journey fighting for Lucy’s vision and health. If you’re new here, you can read about Lucy’s BBS diagnosis here.
A Special Birthday Trip to the Marshfield Clinic
Super fun birthday, right? But it was the only time we could do this so we made it into a “special birthday trip,” a title Lucy took to hook, line and sinker, except for the blood draw 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 specifically for BBS families. It’s called the Center for Excellence. It’s 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 a group of specialists could work together to combat the issues involved with this syndrome. This was the second session they had put together and we were very lucky they were able to squeeze us in.
A Full Day of Appointments
The first of three days was packed with back-to-back appointments. Lucy was a little dreamboat of a girl. It was so fun to compare this trip to when we took her to the National Institutes of Health years earlier for a similar trip where she screamed pretty much from the time we arrived until we left. This time she handled everything beautifully.
We saw Ophthalmology, Genetics, Speech, and Physical Medicine all in one day. When they realized how angled and flat Lucy’s left foot is, they even worked her in to the orthotics department where they casted her for a new orthotic to be done before we left that Friday.
Can I just say how amazingly grateful I am for that? To get everything taken care of for that poor foot right there, right then, 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.
Wisconsin in Fall and a Doctor Who Remembered Her Birthday
I must pause to say Wisconsin is gorgeous. And to say that Lu is a kind of fun travel companion. Dave is too.
I have missed fall the last couple years since it’s just not the same in the desert. So it does something deeply good to my heart to be surrounded by all that color. Believe me, it is so much more gorgeous in person than any iPhone can capture.
We finally arrived, having driven three hours from Minneapolis, and met the other five BBS families there. Dr. Haws was there to greet us with a birthday gift for Lucy. Sure way to win Lu over: give her something that has to do with Ariel.
Lucy’s Birthday Journal Entry
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 crying in the car for so many years? We took her to Applebee’s to celebrate her first day of doctor appointments under her belt and soaked her in as she told us every word she could think of that starts with “A” with her Nanny McPhee smile.
What This Visit Set in Motion
This Marshfield visit jump-started Dave and me into some serious business about how to help Lucy’s future. We learned so much and came home armed with information and important updates for her health. But beyond that, we felt incredibly inspired to help the BBS organization reach out and connect with other families as well as to get on the radar with knowledgeable doctors and scientists who could offer real, tangible help.
This is also the visit that lit the fire under the I Love Lucy Project, our effort to raise funds for the BBS clinical registry. And Dr. Haws, who started this clinic out of sheer love for these kids, went on to become one of the rock stars at the BBS conference in Iowa the following year.
More from Our BBS Medical Journey
Here are the posts that connect to this one:
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 !
This is a great time to be in Wisconsin!! Some of our best weather:) And some of the best doctors:) Thinking of all of you!
oh yeah lucy!! good for you !!
and a whole trip with mom and dad.. you lucky thing 🙂
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!!
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! 🙂
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!!
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!!
Happy Birthday Lucy!:)
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!
She is beautiful, and I have to say that I just think you are one of the most amazing mothers.
I'm from Wisconsin and am back visiting right now. It's gorgeous! I love this state. Happy birthday, Lucy!
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!