The Orthopedic Surgeon Who Rocked My World (or: The Saga That Isn’t)

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bubblesYou all remember, I’m sure, the saga of the orthotics. I’ve been talking about it periodically for years, both here and on Facebook.

After Julianna broke her second brace in January, the orthotist sent us back to the PT.

The PT told me she really wasn’t sure what to say except she’d like to see an X ray of Julianna’s bone structure so we have a baseline and know for real what we’re dealing with here. We know she walks with all her weight on the navicular bone instead of the heel, but what’s going on inside?

So I called the pediatric orthopedic surgeon, and on Friday, I took Julianna out of school yet again to go see him.

Basically, he rocked my world.

Her feet are not going to deteriorate.

Her feet are never going to get “fixed” no matter how what kind of orthotics we put her in. These are her feet. They will always be her feet. It’s okay. Don’t freak out about it.

Her hips and her knees are fairly normal, it’s really just the feet, and the feet are not going to get worse. They are what they are.

Unless she’s in pain, there’s no reason to consider surgical correction (not that I went in expecting surgery).

Unless it significantly improves her gait, there’s really not even a reason to have her wear orthotics.

We do think the orthotics improve her gait, so we haven’t taken her out of them. But I cannot tell you how freeing this news is. We don’t need to fight the huge fight to keep her in them 90% of her waking hours, with the knee-high socks and the question of which pants will fit over or under them and oh Lordy getting those suckers INTO the shoes! (You have no idea. Seriously. It gets my heart rate up, muscling her into them some days.)

We can back off to ankle-high orthotics, if we decide to do so.

We can buy a pair of premade flat inserts that will allow her to wear boots and normal tennis shoes.

We can even let her go without them altogether so she can wear sandals and sparkly shoes with bows on them.

We no longer have to worry about what to get her for birthday and Christmas, because pretty shoes will make her soooooo happy.

So maybe the lesson in all this is the same one I apply whenever I am fighting the same sentence or story element for half an hour: if you’re not making progress, there’s a good chance you’re trying to force something that isn’t supposed to be there at all–trying to solve a problem that doesn’t exist.

The Saga of Orthotics, and why it’s important to talk about it during an election year

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I hope you’ll bear with me today, because there’s a reason I’m about to tell this story.

blog wedding daddy dance

Random cute picture to break up the text, and to offer a glimpse, however blurry, of Julianna’s “old” orthotics, known as AFOs (ankle-foot orthotics)

One thing that sometimes accompanies an extra 21st chromosome is “pronation.” This means that due to low muscle tone, the feet turn out. Julianna has fabulous health and good cognitive functioning but her feet are regularly regarded as the worst the experts have ever seen. She’s been in orthotics—shoe inserts—pretty much since she learned to walk.

Up till now, her inserts have carried a price tag of $1400 per pair. For several years this caused no issues because we have great insurance (because my husband is a public employee). But a year ago, our insurance changed and the provider was no longer in network. So we switched providers and went on faith that we just needed to hold the course. Unfortunately, Julianna has spent the last year with blisters (and now callouses) on the inside of her foot, where her body was fighting the insert because it was no longer what she needed. Even more fun? The insurance denied the claim. After six months of Christian beating them up on the phone, the insurance and the provider got their signals straight, but the upshot was nobody paid for the braces—insurance forced the provider to eat the cost.

This year, we went in wiser. We switched back to the provider we had worked with successfully; we called in the doctor for a meticulously-worded prescription; we talked to the local (taxpayer-funded) organization that funds services for people with special needs; and we made sure they were both in contact with insurance. It turns out Julianna needs a far more restrictive brace—one that goes all the way to her knee. Here’s the cost estimate:

orthotics crop

This is the pre-auth form; for now, as you see, the insurance provider seems amenable, but after last year we’re not counting our chickens.

I began this process in mid-June, and yesterday after a 1-hour consult, about a dozen phone calls and two more appointments, finally we brought home Julianna’s new braces.

Which is where Part B comes in: Sensory Issues.

Another thing that frequently goes along with special needs in general is sensory issues. Some kids cannot wear clothes with tags. Some kids need particular fabrics. Some kids cannot deal with being touched; others freak out with loud noises. I have long said Julianna’s only sensory issue is oral defensiveness, but I’m realizing I was wrong: any touch that smacks of medical practice makes her lose her ever-loving mind.

Step one: Casting.

They covered her leg with a sock and then wrapped the leg with the foot held in position, using a fast-setting moist, Ace-type bandage. I intended to document the whole process, but this was the best I got:

AFO 1

…because within 10 seconds of taking this shot, both Christian and I were on duty, me holding her body as still as I could and Christian holding her leg in the proper position so the orthotist could do the casting.

AFO 2

The finished casts

The rubber tube goes over the sock to help space so they can cut the cast off after it’s set. Total time at the orthotist’s office: 1 hour 15 minutes.

We came back 10 days later to pick up the braces. But it’s not that simple. See, there’s also padding inside the brace, and that has to be done when you come to pick them up. The brace does the major corrections, the pads do the minor ones. And when we got there last week, the lead orthotist decided the braces weren’t tall enough. They needed to be remade. Total time: 1 hour 15 minutes, with nothing to show for it.

We came back for a third time yesterday, at the end of the first day of school, to find an emergency procedure had set them behind by several hours. So we arrived at 3:40 p.m. and left at 6. And there was much wailing and shrieking and flailing of locked-up muscles, along with the word “No.” Otherwise she lost all verbal capacity. And this is what we came home with:

AFO 3

Notice: knee-length socks, which caused extreme sensory anxiety, and hard plastic outer shell (ditto), soft plastic inner shell, and special shoes.

And we have to go back on Friday to make sure they’re not rubbing her skin wrong…and possibly again in two weeks for followup.

Let me emphasize a few points:

1. This is a process we will go through every single year for the foreseeable future.

2. We will never have a guarantee that these suckers are going to be covered by insurance.

3. We have to do this, because the alternative is that her legs grow crooked and destroy her knees.

4. This is only one example in the array of issues dealt with by families who have loved ones with special needs.

I tell this epic-long story, breaking all my rules about keeping posts short, because I want people to understand that many of the life philosophies we cling to, philosophies that make a great deal of sense IN THEORY, really only hold up under circumstances where everything—or at least most things—go “right.” Small government and self-reliance are praiseworthy goals, but they must be pursued in tandem with a view of the world that is “pastoral,” to borrow a word from Church circles.

In other words, rules and guidelines are good, but people are more important.

My family is really blessed to have amazing insurance as well as advanced degrees and jobs that allow us to spend the time and mental gymnastics to successfully navigate the shoals of coverage/not coverage.

An awful lot of people don’t have those benefits.

An ex-legislator once told me insurance is for extraordinary things, not ordinary things, and that for special needs, things like therapies are ordinary. (And, presumably, $4000 orthotics.)

If I have made any point today, I hope it is that special needs are, by definition, extraordinary. Some problems cannot be solved by the private sector; some problems are too big to be borne by individuals without help. It’s not enough to say, “These kids have a right to be born.” If we’re going to support the right to life of children, we also have to support their right to a healthy existence once they’re born. It’s wrong to tell parents they HAVE to have these kids, and then withhold the support needed to raise them. (In another context we’d call that an “unfunded mandate”.)

I post this because I hope it will provide a needed perspective in this election season. This is one of many quiet, nuanced issues that receives zero attention in an atmosphere charged with shrieking about things that, when it comes right down to it, really don’t have much impact on people’s lives. I hope, at a minimum, our story gives people a perspective they never considered before.

Warts And All

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Sure StepsAs if Tuesdays weren’t enough of a zoo–Christian went downstairs to teach with the words, “Good grief! This is nuts!”–I went upstairs to get Julianna ready for swim lessons at 7:10 and discovered her wearing her sparkly new shoes….without the brand new, $1500 Sure Steps that are supposed to be inside them.

“Where are your inserts, Julianna?” I demanded.

She looked at me, lovely and doe-eyed and clueless.

“Where are your inserts, Julianna?” I repeated.

“Because I…” she began.

“I didn’t say ‘why,’ I said ‘where.’ Where did you take your shoes off?”

Fifteen minutes of searching every room, every drawer, every box in the house while Julianna stood at the top of the stairs with her face dropped into her hands, her brain having locked up completely. Fifteen minutes rocketing up a parabolic curve of Mommy frustration. Racking my brain. Thinking:

Did she take them off in the van on the way home from Alex’s piano lesson? But why would she have put the shoes back on? I tied her shoe AT the piano teacher’s house…didn’t she have the inserts on then? Could I possibly have missed that? Did she leave them at the piano teacher’s house?

I called the piano teacher on my way out to the van to check my last brain wave: her backpack.

And there they were: two innocuous hard plastic booties with double velcro straps, cuddled in the bottom of a Tinker Bell backpack for no earthly reason I can discern.

When did she take them off? Did she take them off, or did I just spend fifteen minutes completely flipping out and scolding my daughter for something her PT or her teacher or her para did at school? But why would they have done that? I told them she was cleared to wear them all day on Monday, and this was Tuesday.

We often say of our chromosomally-gifted daughter, “Julianna has a lot going on up there.” But when it comes to really important (and very basic) conceptual questions like “Where are your shoe inserts?”, it is clear that she’s not as advanced as we’d like to believe.

Here ends your “reality check” Down Syndrome awareness month post, shared because I need to be clear that life with DS is not all “unicorns and rainbows.”