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.
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