On the Horizon (Maybe) for Zoe

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As they wait to hear if their daughter is a good candidate for surgery, Shannon and Lee Dingle will praise God and determine their next steps. Surgery or no surgery, they will praise God and move forward.

I need to start this post by making one fact perfectly clear: Zoe is loved exactly as she is, and nothing she might be able or unable to do in the future will change that.

That said, there's this surgery called selective dorsal rhizotomy (SDR) that could be a game changer for her if she's a good candidate. And as I write this, her packet of medical information is on the desk of some folks in St. Louis who will are responsible for the "if she's a good candidate" decision.

Cue the nerves.

I wasn't planning to write this post until we had an answer, but given that most people who have asked about Zoe lately have been treated to way more details about this than they were asking for, I figure it's time to put this out there.

Before I dive into the surgical details, let's start with the obvious question:

Why St. Louis when we live in North Carolina?

A few pediatric neurosurgeons in our state do this procedure, but none specialize in it and none have many years of experience with SDR, based on my research. SDR is a big deal, and I want a specialist and not just a hobbyist if my daughter is on the other side of their scalpel. The surgical team in St. Louis is world renowned: This is what they do, and they do it well.

Furthermore, most SDR surgeons wait until age 5 or older for the surgery, whereas the St. Louis team prefers for patients to be young, around age 2 to 4. At 2 years and 8 months old, Zoe's in the ideal range. They do plenty of SDRs on older, even adult, patients but they've found that orthopedic complications from cerebral palsy can be reduced if the procedure is done earlier in a child's development.

Finally, the St. Louis team is picky. They tell plenty of families, "No, your child is not the right fit for this." They do evaluate children without seeing them in person, but they require MRIs, hip and spine x-rays, videos of a couple dozen physical tasks from multiple angles, a physical therapist's evaluation, and a few extra bits of paperwork.

In other words, a lot of documentation... unless you've completed two international adoptions in the past two years, in which case this paperwork is NOTHING compared to the reams you've completed and had notarized, apostilled, translated, and shipped to the other side of the world.

Oh, and our insurance will cover it, even though it's not in our state, because (a) a doctor in the BCBS of NC network referred us and (b) the team in St. Louis is a BCBS provider for a different geographical area. We'll cover costs for travel, lodging, and our portion of post-surgery therapies (as physical therapy is limited in most insurance plans, including ours), but the bulk of the expenses will be covered.

So what's SDR?

First, let's define cerebral palsy. In CP, brain damage or under-development occurs in the womb or not long after birth. These abnormalities makes their brains communicate the wrong messages to muscle groups. For Zoe and many other kids, the result is spasticity: tight group of muscles that they have to fight against to make the movements the rest of us take for granted.

Remember the last time you had a charlie horse? You know, those annoying muscle cramps where your calf or another muscle gets really tight out of nowhere and it can hurt really bad? Well, that's life for Zoe, except she's usually just a little uncomfortable by her degree of tightness rather than being in that much pain.

In SDR, a patient's back is opened up to reveal the spinal cord, nerves are tested to determine which ones are contributing to muscle spasticity, and the ones that are the most severely causing spasticity are severed permanently. 

Now you're grasping why we don't want just any doctor to do this for our girl...

In the right hands, this sort of surgery can dramatically improve the mobility potential for people like Zoe with severe spasticity. Sitting on her own without support, using her walker more than her wheelchair, becoming more independent in general... all of those are realistic outcomes for her if Zoe is able to have SDR.

So, for now, we wait to find out if she's a good candidate for it. 

If she is, we schedule it and figure out how we'll manage me and Zoe going to St. Louis for a month for the surgery, in-patient recovery, and out-patient rehab program, all while Lee and the other five probably stay put here in Raleigh.

Waiting?

I don't do that well.

I think that might be why God keeps giving me more and more opportunities to practice.

If the answer is yes, we'll praise God and figure out the logistics of what's next.

If the answer is no, we'll praise God and figure out the logistics of what's next.

Because whether this surgery is a good option for her or not, we love our Zoe girl no matter what.

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