The Meat and Potatoes of Cincinnati


If the fifty degree difference between Cincinnati and home wasn’t enough to jerk us back to reality, the giant piles of laundry from the suitcase was.

We are home.

“How did it go?” our dear friends and family will ask.  “Did you find any answers?”

Those are tough questions.

The short version: It went well.

We swam at the hotel pool every day, far past the point of prune-i-ness.  Cee insisted that David and I both go swimming with her.  So we did.  All together.  I paraded across the hotel lobby twice a day (once dry, once dripping wet) in a swimsuit for Cee.   (If that’s not the epitome of sacrifice, I don’t know what is.)

We ate chili (turns out Cincinnati chili has Greek roots and often contains cinnamon or chocolate) over spaghetti noodles and countless pieces of pepperoni pizza.  We also ate at a German restaurant on National Pretzel Day and practiced counting to ten in German.

We saw hippos and cheetahs at the zoo and penguins and sharks at the aquarium.

Eye to eye with a napping hippo.

It would be nice if that was the whole of our time in Kentucky and Ohio.  But that was just the garnish.  All the medical stuff was the meat and potatoes of our visit.

The Meat and Potatoes

We met with Dr. Grom, who is as brilliant as everyone in the online SJIA group said he’d be.  I joked with David that the online SJIA group is his fan club, and now I’m a card-carrying member.  With his gentle accent, colorful striped socks, and curious eyes he reminded me of Professor Bhaer from the movie Little Women (the version with Winona Ryder).


After listening to our story from the beginning-est of beginnings to today, Dr. Grom drew a chart on the marker board in the exam room and explained the categories of JIA to us.

Cee’s case isn’t typical for SJIA.  But she isn’t typical for any of the other subtypes either.  And SJIA doesn’t usually eat away all the cartilage in a joint at such an alarming rate.  Usually it takes much longer.

Given all this, Dr. Grom suspects there may be another autoimmune disease at work here, either in tandem with SJIA or instead of SJIA.

Since certain disorders respond to the same treatment differently, being sure of the diagnosis is key.  Before making any moves, we have to figure our that first piece of the puzzle.

If we can pinpoint exactly which disorder is a work, we can know the best course of treatment.  While we were in Cincinnati, Cee underwent some labwork, and we’ll have a phone conference with Dr. Grom to go over the findings.

We also decided to be a part of a research study that involves doing a complete genetic map of Cee.  There are certain markers for other disorders that they’ll be looking for.  The project will take months, but we hope it will offer insight into what’s going on behind the scenes.  There wasn’t any risk to the study– Cee just had to have blood drawn.  That’s my kind of study.  Whoop whoop.

In this game of Chutes and Ladders, we were expecting that an appointment with Dr. Grom would be our ladder up to a new square on a new row.  Turns out it was a slide back down to the very beginning.  Square one.  If I was to sum up our visit, it would be that we’re returning to square one.

However, we thought we were at the end of the game and didn’t know what would come next.  There was a lot of fear in that.  Since returning to square one, there are many possibilities and paths that we might take, depending on how the data comes back.  There is comfort in that.  In not being backed into a corner.

The troop of doctors we saw all confirmed that Cee will need a double hip replacement.  As far as that goes, we don’t have options.  The earliest anyone has seen a hip replacement is eleven.  She is eight.  That means at minimum we have three years of waiting.  Even at eleven she might have “skeletal immaturity” that makes hip replacement unwise.  So we wait.  Maybe three years is long enough for me to come to terms with the idea of a hip replacement for her…

We left with a big goal.  We need to build muscle mass on Cee. We need for her to be as active as possible.  For anyone who has watched her slow, painful, awkward gait, you know what a challenge this is.  The doctors encouraged our attempt at increased pool time, but pushed for more to be done out of the water as well.  They suggested meeting with OT to help her take back her independence.

I don’t know how we will be able to facilitate that.  It was hard enough to think about increasing swim therapy with our lifestyle and schedule.  If there are any physical therapists out there with suggestions about how to get a surly somewhat immobile eight year old to build muscle mass, we’re all ears.  I’m not sure where to start with investigating our options for OT either.


Will we be going back to Cincinnati?  Almost certainly.  Fortunately it seems like a followup visit is a fair way down the road.  We’ll set up a phone conference with Dr. Grom to go over the lab results sometime in the next couple weeks.  In the mean time, we’ll keep all Cee’s medications the same and try to encourage more movement in our little bookworm.


We didn’t leave with any answers.  In fact, we left with most the topics we had wanted to bring up undiscussed.  Most our questions didn’t make sense without the framework of a correct diagnosis.  Maybe we weren’t going to Cincinnati for answers after all.  Maybe we were going there to figure out what questions to ask.


And so— we wait.  We press on, trying to enjoy each day as it comes.  Even now that we’re getting back to our usual routine and eating habits (buh-bye swimming pool and sharks, hello broccoli and schoolwork), we are keenly aware that it’s the little moments that are our biggest treasures.  It’s overcoming the struggle and enjoying those little moments when there are couches full of laundry to fold and who-knows-what smeared on the dining room floor.  That’s life.  That’s where we are.


Thank you for following along on our journey.  <3






  1. // Reply

    Well! This is a positive path in a direction I didn’t even guess was possible: that you need to double-check her entire diagnosis in order to consider treatment options. Wow! I love the easy-sneezy study you’re doing. Genes are so cool.

    I pray for wisdom for the whole medical team!

    1. // Reply

      I didn’t think this was an option either. Thank you for your prayers!

  2. // Reply

    Glad to hear it went well and that you have found some comfort. The tone of your writing nicely reflects that.
    Little Women–one of my favorite movies evvvveerrrrrrrrr. I think partially because of the soundtrack. And it’s a period film. Ahhhh.
    And that chili!!!!! What?!? Wow that sounds like quite the dish! Would you eat it again?
    It sounds like it’s good to be home. Welcome back!

  3. // Reply

    I’m glad to hear that you have some new directions to go in. It’s frustrating to have to feel like you are starting all over, but having possibilities and options is encouraging.

    I have wanted to try Cincinnati chili forever. Did you have it with the chocolate? Was it good? I’ve meant to make it for years and just never have. 🙂

    1. // Reply

      We did try the chili– but we couldn’t tell what the exact seasonings were. We tried it at two different places, and it tasted different. One for sure had cinnamon, and it was darker than the chili we’re used to, so perhaps there was some chocolate?

  4. // Reply

    Well, that is an interesting twist! I am so glad you didn’t come home feeling like all doors had been slammed in your face, though I know the long wait for genetic results can be hard. Prayers continuing for you!

    1. // Reply

      Right? I think ultimately her diagnosis is true, but that there might be something else happening concurrently. We’ll wait and see. Thanks for your prayers!

  5. // Reply

    Having lived with something vaguely akin to what you and Cee are dealing with gives your accounts a particular appeal for me.

    I am glad to hear that genetic screening is available – – – and possible for you. That’s one of many medical technologies my parents would have, I think, welcomed back in the mid-20th century.

    I am also glad to read that you are being rationally cautious about accepting diagnoses. We learned the hard way that doctors are not always right: and may have motives which are not compatible with a family’s best interest.

    I’d like to think that some of the bioethics issues have been addressed by now – but human nature is what it is. Happily, I suspect that many doctors actually have the health and care of their patients as a priority. It sounds like you have found some of them. 🙂

  6. // Reply

    Hi! I found your blog fairly recently and really love it-so real and relatable! Anyway, I’m a PT and would love to help come up with some ideas if you’re still looking for some input! If you’re interested shoot me an email or leave your email and we can get things rolling. I’m praying for you and your family!

    1. // Reply

      Yes, yes, yes! I will send you an email. Thank you for offering! 🙂

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