A Mulan Unit Study
(The Cincinnati scoop is down below, in case you want to skip the cheerful toddler pics.)
This afternoon I noticed that Bea was sporting lavender eye shadow, which is particularly noteworthy because she is only a year and a half, and I don’t own any eye shadow. Putting two and two together, I figured out that Elle was the guilty beautician.
Unfortunately I didn’t get a picture until the end of the day, and you know how hard it is to find good-quality Crayola makeup these days. So it’s not quite as vibrant as it was earlier.
The kids borrowed the Mulan DVD from my parents, and I think her matchmaker visiting getup was the inspiration for the marker makeover.
As a result, the kids have been carrying sticks around the yard, preparing for the invasion of the Huns.
They’ve been playing with their Mulan dolls made from their plus plus blocks.
Yes, people. This was our homeschool today. (Before anyone raises a fuss, we also did fractions, spelling, phonics, reading aloud, handwriting, religion, and lots of playing outside. So it’s not all Disney 101.)
For sure we have music covered. Collectively we’ve been singing bits of “I’ll make a man out of you” and “Reflection” nonstop for days.
It’s been actually, literally, for real nonstop unless we’re sleeping or eating. It got so bad that David officially issued moratorium on Mulan songs.
That’s a thing. A Mulan Moratorium.
I’m relieved. It’s like eating nothing but cupcakes for days. Sure, they’re good. But after the first few meals of just cupcakes, a salad starts looking pretty good. And watching it now as an adult, it does feel sort of agenda-y…
So goodbye, Mulan. We’ll send you and Donny Osmond back to Grandma’s. And hopefully goodbye DIY eyeshadow.
(PS– How do I get my kids to stop drawing on themselves or each other? Moe is sporting some sort of tattoo sleeve or leg equivalent all the time. Elle likes doodling on herself, too. They have notebooks full of paper, so that can’t be the reason. Perhaps it’s lack of supervision? Usually I’m all, “Here’s some makers and paper. I’ll be in the shower. Don’t die.” Maybe I need to be more militant. Usually I don’t get too worked up. The only punishment is overly vigorous scrubbing which no one enjoys, but apparently isn’t enough of a deterrent.)
Well, maybe starting tomorrow I’ll be swift as a raging river, with all the strength of a great typhoon in my marker regulation. Oh snap. This is going to be hard. “Whoooooooo is that girl I see, staring straight, back at meeee….” Must. Find. New. Earworm.
A Call from Cincinnati
While driving home today from a work trip, David got a call from the pediatric orthopedic doctor we saw in Cincinnati. The doctor finally received (no thanks to Mayo, but that’s another story) and reviewed Cee’s latest MRI images.
Here’s what we were waiting for from the orthopedist:
There was a possibility of getting another MRI done that could show additional “markers” for the progress of the disease. We wanted to make sure that it would be worthwhile before pursing more testing, though.
If there is cartilage still present, there’s a weird, fairly uncommon technique of joint manipulation that (inexplicably) can sometimes stimulate cartilage to regrow. It would involve giving Cee an epidural for several days and then hardcore moving her hips. Seriously cranking on them. Because of the epidural, she wouldn’t be able to feel it, in theory.
When the doctor brought up the possibility of this procedure, he actually said that they aren’t sure why it works, but every once in awhile, it does. (Cool. I’m down for trying things that offer a low success rate but a lot of frustration for Cee.)
Here’s what the pediatric orthopedist said:
The MRI images are sufficient, and there wouldn’t be any benefit to getting an additional MRI at this point.
Cee’s images show virtually no cartilage left in her hips, so the joint manipulation wouldn’t be beneficial. There has to be something there to stimulate for it to work.
It looks like her femur and pelvis are fusing together on their own. On the up side, that should mean her pain will decrease eventually. On the down side, that means her hip is fusing. Which means further limited movement. Which means it’s going to be hard to keep her muscle mass where it needs to be in order to do a hip replacement down the road. No timeframe on how long this self-fusing process might take.
Here’s where we are:
We were hopeful that Cincinnati would provide additional options. While it’s been good to hear that these doctors are coming to the same conclusion as our Mayo team, once again we’re simply recipients of sympathy and awe. There are no options.
As I’ve said over and over, Cee is a brick. She’s doing fine emotionally. The weather has been perfect for playing outside, and she’s never far from a stack of books. She’s even tried twice (and failed…which is sad) to ride her bike. But the fact that she’s even trying is great.
We are still waiting to hear back from the rheumatologist in Cincinnati about some labs, but I am 99% sure that any insight might possibly be useful down the road, but not today.
We still need to get Cee some new tennis shoes (she hates tennis shoes!) so she can wear her new orthopedic inserts. They slide out of her sandals and don’t fit in her other shoes. David has had to do a lot of traveling since getting home from Cincinnati, so we haven’t been able to orchestrate a shopping trip with just Cee yet. So at least we have that tangible task to complete. It’s something to do besides wait and watch, which is comforting.
We started seriously looking at handicap accessible houses earlier this week.
We’ve been through a lot the last four years, but our house is still home to a plethora of happy memories. We have a good life. (See above about the kids pursuing whatever interests they want, including but not limited to cosmetology and stick fighting.)
Cee is doing well now. But I don’t want to wait until things get super serious (read: using a wheelchair 100% of the time, increased pain, further destruction of other joints) to make a transition.
I don’t want a new house to have only negative associations. Sure, we can make happy memories anywhere, but it’s going to be heckalot easier before things get really bad.
Things are going to get really bad. All the sympathy and awe in the world isn’t going to change that. That’s not being paranoid. That’s not a far-fetched scary dream. That is reality. We are on the “wait many years for a hip replacement” track and the “hope no further complications pop up” course.
I don’t like being unsettled. Anti-patience is my coping mechanism. Why wait when you can blindly plow ahead?!?!
David is much more methodical. Analytical. Deliberate. And in this situation, his method makes more sense. But waiting is harrrrrrrrrrrrd. We looked at house earlier this week, and I’m ready to move in. Even if it isn’t exactly perfect for us, it’s progress of some sort. Moving forward by actually moving. Because waiting around to be able to build our own house on an acreage isn’t happening.
In truth, there’s no reason to rush off and buy a house just so I feel less helpless. In truth, we have to be much, much more careful than the average family as far a buying a home. When they say “try to have six months of your expenses saved as an emergency fund” it’s almost incomprehensible. Cee’s infusion alone costs about $10,000 a month.
Thank the Lord we don’t actually have to produce that every month, but all it takes is one little change in regulation, one little hiccup in our insurance, one little bump in the co-pay assistance program offered by the pharmaceutical company, and we’re looking at some tough choices.
(It happened with the last medication she was on, which was only about $3600 per month. We received a faulty shipment of the daily shots that we administered at home. While we called the pharmaceutical company incessantly for days to get things sorted out, our insurance wouldn’t cover another monthly dose until the end of the month, because they had just paid for a month’s supply a few days earlier.
We sweet talked a local pharmacy into selling us a week’s supply instead of a whole month and hoped that would fill in the gap until The Worst Company Ever could send us replacement medication. We paid cash out of pocket. The company never reimbursed us. Eventually (after months of calling), they did offer to replace *all* the faulty product (instead of the limited amount they initially replaced), but by that time Cee had switched to monthly infusions.)
At any rate, we have to be cautious about movement that isn’t lateral as far as houses go. Plowing forward is an unnecessary risk. For now we’re better off waiting. Doing nothing.
I guess that makes us helpless.
There’s nothing we or anyone else can do to change our track and course.
In middle class America in this day and age, that’s a weird sensation. Shouldn’t there be some boot straps to pull ourselves out of this place? A medicine to fix all this? An invention from Shark Tank that will solve everything? A probiotic organic vegan supplement we can take?
We are helpless.
That’s not fair. There’s been a lovely response to the “Let us know if you need anything” post. We have received help in the form of prayers and fruit and books and quilts and kind words and lawn mowing and more over the past few weeks.
We have been helped. We are help-filled, full up with help from others. Somehow that makes facing this stretch of the road easier. While there isn’t anything anyone can do fix Cee (though I’m trying my best with hiding collagen and extra green vegetables in her food…don’t tell), we have been helped. And we know we can get through the next few years with the people who have already volunteered to stand beside us and bear this cross.
Thank you to anyone who has helped us during this period of overwhelming helplessness. I haven’t had a moment to send out official thank you notes since before we left for Cincinnati, but we are grateful that you’ve chosen to journey with us. <3
“Did you find out anything from Cincinnati?”
We need to treasure the good days as best we can while they last.
Mayo’s administration may be irritatingly inefficient, but Mayo’s conclusion matched that of the expert-est experts in Cincinnati.
We have a wonderful support system who makes this diagnosis bearable.
Thanks again to everyone who made the last few months bearable. We appreciate your prayers and support very much.
Linking up with my 2 long takes for 7 quick takes with Kelly. Because that’s a thing.
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