Tuesday, November 20, 2012

Surgery for Cora

"A child's vision doesn't finish developing until around age nine." is what our pediatric opthalmologist (I'm getting better and better at correctly spelling that word on the first try by the way) told me this morning. I'll explain how that so seriously impacts our situation momentarily, but first...

Cora should be having surgery to correct her strabismus (struh-BIZ-mus) within the month of December. The term "strabismus" is how we describe that her eyes are not properly aligned. For her, that means that her right eye turns in toward her nose. Surgery is rather simple, really. That's probably why this post is so long and yet, this is the very first thing I'm explaining. Dr. S will (stop here if you're squeamish) reach in, between her eyelid and eye, and tug on the muscles that hold the eye in place. He will cut and suture on one side, effectively shortening the muscle, and tug on the other, effectively lengthening, or stretching it. He will also adjust one of the muscles that holds her eye in place vertically because that right eye also tends to sit a little lower than the left. Surgery will take about an hour.

So, as I mentioned, surgery is the easy part. The difficult part is determining whether or not it will be effective long-term.

I'm going to have to go back and read my last post about this while situation, because as I learn more, I become more and more certain that I explained things at least somewhat incorrectly four months ago, so if you'll bear with me, I'm going to give it another go. This is as much for me (if not more) as it is for all of you, because I process and digest information as I write it. Here we go.

We've been patching at two hours daily for four months now. One month ago we saw Dr. S and he looked at Cora's eyes. Specifically, he was looking to see if her weak eye was any stronger. He did that by analyzing her "focus" with that eye. What he found was that the strength of the eye was largely the same. It hadn't gotten any stronger, but also, it hadn't weakened. He asked us to patch for one more month before we consider surgery.

Why? why patch for one more month when the first three didn't seem to do any good? Assurance. Because, if after one additional month that eye decided to get a little stronger, we'd probably patch even LONGER before surgery and allow it to strengthen even more. You want the weak eye to be as strong as it can possibly be to have the best chance of accepting the changes the surgery will impose on the eye, and the eye-brain connection.

So, today we saw him again. As I had suspected, Cora's weak eye is still the same. Now I'm not necessarily discouraged by this. It's neither good, nor bad. The positive side of this is that she can have the surgery that will make her look symetrical. The negative side is that, because her eye is still relatively weak (we know this because, given the option, she will NEVER choose to focus with her weak eye. Only with her strong eye) there is a greater chance her eye will reject the surgical change, and fall back into misalignment. This is where we have a new term to learn: Amblyopia (am-blee-OPE-ee-a). This is a term we use to describe a malfunction in the way the eye and brain communicate

By patching we've been attempting to correct the amblyopia, and force the brain to use the weak eye. When she has her patch on, that works. She uses the weak eye, focuses with the weak eye, and can do almost everything she can do when she's patch-free. she can crawl, focus on faces, stand, eat, you name it. She CAN see out of that eye; although, to what degree, we won't know until she can verbalize it to us. The persistance of the amblyopia may, or may not be caused in part by the retina atrophy she was initially diagnosed with. Retina atrophy, while more of a description than a diagnosis, just means that her retinas don't look like they should. But, they look identical in both eyes, so it could just be a congenital anomaly, and not the cause of any of her eye problems.

Is anyone still listening, or have I lost you all? Great.

So, the BIG question Dr. S answered today was: is it prudent to do surgery now, or more prudent to wait? He feels confident doing the surgery now, but also gave us the option to patch longer if we wanted to, in the off chance that her eye decides it's finished being stubborn. The benefit to doing the surgery now is that she's younger, and her brain is more capable of accepting and adapting to change. However (and this is a BIG however) Dr. S feels that Cora's case carry's a much higher surgical failure rate  because of two factors: the unknown role retina atrophy is playing, and the curious fact that patching hasn't changed the strength of her weak eye. Although these two factors make it more likely that her eye will wander back out of alignment, waiting won't likely change anything, as proven by the previous four months of patching.

So, in two to four weeks her right eye will be straightened. Then we quit patching. HA! kidding. Then we begin patching LIKE MANIACS so that what has been done surgically isn't un-done by lingering amblyopia (aka a stubborn brain-eye connection that liked it's misalignment thank-you-very-much). Dr. S. said this is the only downside he sees to performing surgery now: once the eyes are aligned, it makes it harder for parents to patch. It makes it "look" less necessary, when in fact it is MORE necessary.

It was around this point in the conversation that I asked what I look at now as a rather stupid question. Ok, it wasn't stupid, but, given the answer, it was near sighted (badum bum, vision joke). How long do we patch after that? like six months or so? (that was me being what I thought was realistic. considering we've already patched for four months, I thought saying six months would be over-and-above his suggestion. oh how wrong I was). "Well," he said "A child's vision doesn't finish developing until around age nine, so you'll probably be doing some measure of patching until then." Insert wide eyed half-choke. NINE? Did he just say NINE? Um, yeah. Yeah he did.

ooooookay, so, now my picture of this whole adventure has become about twenty times wider, and the light at the end of the tunnel about 1,800 miles further away.Yes, I'm glad she's having surgery. Yes, I wish her eye had shown some sign of ability to strengthen, yes I'm concerned that the brain-eye connection, which may or may not be related to, or impacted by, the retina atrophy (or the coloboma, for that matter, although he didn't mention it) will render the surgery unsuccessful. But no, this isn't keeping me up nights. I'm at relative peace about it, surprisingly. Maybe it's because it's so very much out of my control. Or maybe the fact that she can so-obviously see - at least to some extent - gives me comfort. Either way I have no way of predicting or changing the outcome of this process. except by continuing to follow the Dr.'s orders to patch. And patch. and (apparently) patch.

Which I hate. I totally hate patching. So, if you've seen me, and my daughter, and son, and I've appeared upbeat about the whole thing, you should know that while I'm not wallowing in pity and stress, and overall anxiety about it, I HATE PATCHING. I hate putting elbow immobilizers on my sweet child. There is nothing I enjoy about patching, except maybe to enjoy hating patching.

But young kids pick up on that sort of thing so I try (very hard) to keep my patch-hating attitude to myself.

We should have a surgery date soon, and I'll update then. Cora should have straight eyes before her first birthday, and Lord willing, for a LOOOOOOOOOOOOOOONG time after that.