Ok, really “two days” in the life, but from the time we leave to the time we get back it really is close to 24 hours. We do these visits lickety-split.
For about a year now we have making this regular trek to Wisconsin as part of a clinical trial. (I talked about details of that trial back HERE if you want more information.) We were a little hesitant about all this at first, but it has made a world of difference for Lucy, which in turn makes a world of difference for us, and we are SO GRATEFUL.
We sometimes have two weeks between visits, sometimes four, and now that we’re to this stage we are spanned out every six weeks which is so nice. Because it’s a LOT of travel! I figured for record’s sake I should write down how a typical visit goes, and figured blog readers might be interested too so here we go:
Dave and I take turns traveling with Lucy. And we’ve had some pretty good “Wisconsin dates.”
Most of the time Lucy is the best date, asking a million questions: what time do we board? How many miles do I have on this airline? How many minutes until we land? How do I loosen this seatbelt? What time is my party on Saturday?
But actually by now the questions have subsided and she can guide us around those airports to the right gate like nobody’s business.
We bring one rolling suitcase to share, our pajamas in one side, an insulated ice pack filled with medication in the other. Lucy hauls her backpack filled with who-knows-what on her back, hugs her pillow stuffed with her blanket and Leo the lion in the front and follows her cane she gently nudges in front of her.
We drive and park at the airport. We take the train to the terminal.
We fly for three hours. We walk 1.6 miles to the car rental spot (ok maybe a slight exaggeration but really not much!) and drive in the dark, through giant banks of snow on either side of the road and icicles lining the buildings in the winter, and heat in the summer. We to arrive in Marshfield where the clinic is past midnight where we sprawl out on our beds wishing they could hold us for longer! Our appointments are always at 7:30am at the clinic.
We are welcomed by the best team of helpers and the best doctor ever: Doctor Haws, who has taken BBS families under his wing in more ways than I can count. They draw blood, ask us questions, go over medication, and give us lots of love because that whole team is the best.
And then we leave, returning the same way we came, drive, drive, drive, return the car, find some food, and fly. Back to our car, back through traffic, and home again.
I put these pictures of our last trip on my Instagram story so sorry for those of you who already saw them there but I want them here too.
Lucy and I took off on an earlier flight than usual, which gave us time to get mad at a vending machine that stole our money at the airport (ha!), catch a gorgeous sunset infused with a huge rainbow on our drive:
… and play some card games while we listened to Hamilton at the hotel.
Got to talk to all of my kids en route. Sometimes drive times are the best. And time at hotels too:
Two favorite “pictures-in-my-mind” from Marshfield: 1) landing at dusk in lake-covered Minneapolis, green stretched out dotted with so many gorgeous lakes:
(Yeah, pictures can’t do it justice…)
2) barns that dot the edges of our three hour drive each way, one in particular: large and red with an oversized silo surrounded by picturesque black and white cows.
I don’t have a picture of that specific one, but I love that this time around we had time to stop here and there to take in some of those barns, and cool buildings too:
Lucy wasn’t overly enthralled about those beauties, but she was patient with me!
I was so hoping for Fall this time around and we got a tad bit of it:
I love to have Lucy at my side on the airplane, laughing to a movie or filling a whole page with numbers and math facts. She started up a conversation with the mountain-man firefighter beside her this time around, asking if he lives in the desert. Sometimes she sure surprises me.
We flew through the most gorgeous clouds:
And got back HOME. Lucy gets frustrated with me if I mess with her “leading the way” so sometimes I lag a little behind:
She is a whipper-snapper I tell you! But I sure love that little, brave travel companion of mine! And doctors and modern medicine that do so much good for families like ours.
Would you share specifics about the medical trial and outcomes hoped and what you are seeing? If too personal, obviously not. I think the aspect of making medical choices for our kids, knowing there could be side effects but hoping for the best is really relatable even if the medical issue is different. I’m thinking in terms of ADHD, anxiety, depression and the choice to treat, knowing it may not be a panacea for your kid is a common and tough conundrum for parents. Wish you guys the best!
Yeah I’m curious about the trial as well. Shawni might not be allowed to divulge all the details. One thing in particular I want to know if this is a continuous medication that Lucy takes every day, or if she gets injections every time they go there.
Whoa, sorry it’s taken me a while to get back to these questions! Yes, it’s so difficult to weigh the side effects with the benefits but we feel like this has changes Lucy’s life in many ways. And ours too in the process. I realize this sounds dramatic, but we have lived our lives around trying to control food intake to help Lucy. BBS kids have reduced or non-existent “leptin” receptors which help them realize when they are full. So without this, people with this syndrome are always hungry. This results in huge weight gains which leads to a myriad of problems including diabetes, knee and joint problems, heart problems, and diminished abilities to maneuver and enjoy life. Lucy was obsessed with food, that’s all she thought about, wrote about in her journal, etc. It took her focus off of so many important things and she was grumpy all the time, lashing out at everyone around her. This drug helps control that appetite. It has changed her world. She is so much happier and healthier. As I mentioned in the other post, the biggest side-effect is that her skin pigment has changed quite dramatically. Not sure if this will continue or if the drug will be modified to change that in the future, but we feel so grateful for all that it is doing for Lucy. She is able to concentrate in school, is happier and healthier, so much more agile running around. Loved the conversation we had walking Bo the other day as she explained to me how she is feeling, made my heart want to burst right out of my chest. Thanks for the well-wishes, Nat!
Amy good question about the continuous medication. Lucy gets an injection in her belly every morning. It was kind of an ominous thing in the beginning but we’ve all become used to it and she is so brave and good at it by now!
So happy to hear and visibly see that Lucy is receiving the positive benefits of the drug trial. How wonderful for your whole family! You are raising 5 beautiful, smart, compassionate, spiritual human beings. We have a granddaughter with a rare genetic disorder so we have a heartfelt understanding for all special need kids and adults, and their families.
Oh Joyce, thank you for your kindness. I wish you the best with your granddaughter!
Please let Lucy know that she is inspiring me to be brave and face a battle that has come my way. Recently I’ve had a second bout with Presumed Ocular Histoplasmosis Sydrome and will be undergoing a series of treatment to keep it at bay. She has taught me to appreciate each day and look at the beauty in front of me and in my memory. I’m afraid and not afraid…life will go on if I go blind just in a different way and I can do it with my family by my side. We’ve been following your blog for awhile and it’s so inspiring and real…the good and the not so good! Thank you for sharing your story and inspiring me to move forward and not just stand still. I’m a mama of 3 (a 16 yr old boy and twin 11 yr old girls) and have a lot of living ahead of me!
Thank you for sharing, Stacy! I will let Lucy know she’s an inspiration and it will make her happy. I’m so sorry you are dealing with that syndrome, and hope the treatment will work to keep it at bay! You DO have a lot of living ahead of you! If your vision continues to diminish be sure to read “And There was Light” that I recommended a little while back (here: /2019/09/light-in-darkness/) It is so beautiful and gives so much hope!
Sending love your way!
Whoops, I didn’t link that book very well, here’s the link: https://71toes.com/2019/09/light-in-darkness/
I’m surprised you didn’t move there for the year. It’s a lot of appointments.
I know, right? So much travel! But so worth it!
So happy Lucy is doing well!! Do you know if the medication will be available to Lucy after the clinical trial is over?