Thursday, December 20, 2012
But I digress...
Cora's post op appointment with the good Dr. S. was on Monday. The same day she spiked a fever for no apparent reason. yay. Said fever was completely unrelated to her eye though (according to the doctor who gave her a thorough exam), which made me feel better.
After looking my daughter's eyes over, Dr. S remains happy with the surgery. Although the fixed eye looks over corrected, that is intentional, he said. The muscles will "stretch" a bit (for lack of a better term, because they don't really stretch as much as they just settle out) and idealy that will leave her eye looking straight.
So my following questions for him were in regards to Cora's long term prognosis. Will the surgical change last? Will patching magically begin to have an effect on the strength of her eye? Will she begin to focus with her weak eye? Here is how he explained things:
Cora's situation is a bit of a "chicken or the egg" enigma. You see, if her strabismus (eye crossing) caused her amblyopia (brain eye connection issue), then the surgery may have solved the issue. However, if the amblyopia caused the strabismus, then we've only temporarily straightened a weak eye, which will fight to return to its crossed position. Weak eyes tend to wander and/or cross.
This is why we've been patching - to encourage that week eye to strengthen so that it would have less of a proclivity toward crossing and/or wandering. But unfortunately the 5 (nearly 6) months of patching we've done so far haven't had any effect on eye strength. Darn. That is surely disappointing.
So then, what about glasses? Because Cora is neither near sighted nor far sighted, glasses wouldn't do her any good. Any visual difficulty she has (we know she has some, but we won't know the extent of it until she can verbalize it through a visual exam) is caused by either the amblyopia, or the retina atrophy - neither of which can be either surgically repaired, or aided with lenses. Double darn.
So here we sit with our lone method of visual therapy: patching. This is what we'll continue to do for a looooooooong time, hoping upon hope that her eyes get stronger through this therapy, and that having them straight now will give them an edge on fixing themselves.
So that was long and technical, I understand. We'll go back in 6 weeks to take measurements again. By this point her eyes will have completely healed from surgery. After that we'll be on a 4-6 month routine of check-ups with our PO. And patch we shall.
Thursday, December 13, 2012
Well, we're all done for now!
Surgery took just over an hour. The good doctor was happy with the initial results of his work. You can't tell in the picture because of all the swelling, but the eye is actually over corrected, and intentionally so. Over the next two weeks we'll be watching to see how her brain responds to the surgical alignment of her right eye, and we're prayerful it will end up delightfully straight.
Coming out of anesthesia was WAY easier this time than it was after her sedated exam in July. This time she woke up very slowly, already in my arms and nursing. She is very groggy, drugged, and sleepy. She will wake, but only temporarily before sucking herself back to sleep.
I cannot thank you enough for your prayers on our behalf. We're so grateful for friends and family who love our children, and intercede for them along with us.
We go back for post op on Monday morning, I'll try to update on Cora's recovery before then
Tuesday, November 20, 2012
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.
Tuesday, September 25, 2012
That is my daughter, at 8 months old, feeding herself with a packet.Also could a pouch. or a squeezie.
I could easily dig up for you a bunch of pictures of my son doing this same thing, but for the sake of a prime example, I'll share this one (Levi, 20 months):
But the bottom line is, while these things are AWESOME, and convenient, they're also expensive. As in, when on super-duper sale, I might be able to get them for a buck each. EACH. hmph...
So, imagine my shock and awe when I found this lovely device. I saved a whole $25 of my monthly spending money (because, as you may remember, we're a cash-only family) and I purchased this brand spankin' new Infantino product:
Just you wait for the pictures that will follow once I get my wits about me. Just you wait.
this is GENIUS!
Sunday, September 2, 2012
Thursday, July 26, 2012
Praise the Lord, because whether we honestly believed it, or just gave it lip service, the outcome was, and has always been, in His capable hands.
First, a summary of where we've been, where we are, and where we're going.
As you probably already read (but I can never remember exactly what I've written and what has just been in my head) We went in for this anesthetized exam for a few reasons.
- Cora's eyes were not tracking. They were turning in. The right one worse than the left
- One of her eyes was not formed completely
- She had what appeared to be scaring at the base of the retina, near the optic nerve, in both eyes
Saturday, July 21, 2012
Let me explain. This afternoon I received what was possibly the most welcomed phone call with possibly the most relieving information I can remember in recent history. It was dr. So. As in, he called me. A pediatric ophthalmologist called me directly. Not the nurse, but the actual specialist. I was floored.
Anyway, the short version is (because I'm typing this on my phone) cora cleared all her blood draw labs. AND:she can be breastfed all the way up to 4 hours before being anesthetized. After the scheduling nurse told me she needed to be npo for 8 hours, I did some research. Turns out, breastmilk is a category unto its own. Because it is so quickly digested, the surgical anesthesiologist deems it safe within four hours of go time. Nothing else is approved, just breastmilk.
I know this probably didn't sound like a really big deal (not nursing for 8 hours) but to me, it was huge. The prospect of listing to my baby cry all night long The night before such a procedure was daunting. Now, had the Dr maintained it was necessary. Of course I would have followed his instructions, but I am so grateful it isn't necessary. So, so, grateful.
Yes, we noticed all of these things when she was quite young. Yes, we took our concerns to our pediatrician. Yes, I worried. But the VAST majority of the time, in the VAST majority of children, these kinds of things work themselves out within the first four to six months. Our pediatrician said it would be most prudent to wait it out and see what happens. I'm not kicking myself for following her instruction, but I guess a part of me does with we had the benefit of foresight and had known this would still be an issue so we could have had it looked at sooner.
Saturday, July 14, 2012
That is when Cora's exam/potential surgery is scheduled.
Although I know this should probably be the least of my concerns, I think the thing I find most daunting currently is the prospect of not nursing her at all the night before (no food or drink 8 hours prior is the requirement).
Please bathe our little family in prayer, would you? I'm not even sure what to pray right now, but He knows, and I'm quite sure He intercedes for me when my words are totally inadequate. I guess our biggest hope would be that the two surgeons (Dr. P and Dr. S) would be able to get a very clear view of what is going on/has occurred, such that we have a very clear diagnosis and treatment.
Sigh. I'm a wreck.
I just want this all to be over with so I can be on the other side looking back on a completely successful procedure that gave glory to God. Because that is what I want it to be.
Thursday, July 12, 2012
Monday we saw Dr. Sauberan (Dr. S) who told us that Cora had what he called "scaring" behind her eye, around the optic nerve. He also said that her right eye did not form 100%. Both eyes turn in occasionally, the right one more often. Usually Dr. S would have prescribed glasses for the turn, possibly a patching regimen as well, but he wanted a specialist to look at the back of her eye first to make sure there wasn't something related to that scaring that could make her a good candidate for corrective surgery.
So, he referred us to Dr. Pan (Dr. P) who works as a retinal specialist, mostly with elderly folks with glaucoma, and those with diabetes. He is a really nice Dr. who also happens to have a 6 month old baby. Because Cora is a squirmy worm of a child, he couldn't get as good of a look as he would have liked (we kinda knew this would happen going into it, as Dr. S warned us) He saw enough to make a few conjectures:
- The scarring he can see looks like it is old. Not new. It looks like it is done, not continuing. I emphasize that he made this remark about the scarring he can see, because it is possible that there is more he can't see. In his words, he got only a "very rudimentary look" at the back of her eye.
- She could have a number of things going on behind her eye, and the only way to get a good look is to put her under anesthesia. This will happen some Thursday morning in the next month (the scheduling nurse will call me) and will be a team-effort between Dr. P, and Dr. S.
- If, when they put her under anesthesia, they find a fixable problem, they will intubate her and perform surgery right then and there.
- If they don't find a fixable problem, then at least Dr. P will have taken a professional, and lengthy, look at the back of her eyes, enough to say what the pressing issues are. At that time Dr. S will probably prescribe either glasses, or a patching regimen, or some other course of action.
Monday, July 9, 2012
To be fair though, I had no idea what to expect.
I haven't said too much about Cora's eyes yet because, frankly, until now there hasn't been much to say.
Cora, like all newborns, liked to cross her eyes. If you've had a newborn, you know exactly what I mean. But by four months she hadn't outgrown the habit. The pediatrician wanted us to wait until six months and see if they'd straighten out but they (namely her right eye) didn't. She recommended us to the only pediatric ophthalmologist in town, Dr. Sauberan.
So, at 1:45 today, squarely in the middle of nap time, Out we went to see the good doctor. It's important to note that an ophthalmologist is a step above an optometrist - which is a God-sent, because we don't have Cora on our vision insurance. Hurray for Medical insurance coverage of Ophthamology!
So, he dialated her sweet little eyes. We went back out into the waiting room for thirty minutes with an overtired baby. We went back into the exam room with an overtired baby. The good doctor looked at the over tired baby's eyes. Here is what he saw:
Both eyes cross. The right one crosses more. There is something wrong at the base of her eyes - at the optic nerve - but it's difficult to tell what that is. Again, the right one is worse, but the problem affects both eyes. He said it appears as though one of two things is happening. Maybe both.
First, it could be that the eye didn't form all the way. Eyes start out flat and then wrap around themselves during development like a taco. Her right eye is missing a little piece at the bottom, almost as though the eye never finished forming.
Second, the doctor noted a fair amount of what he called "scarring" at the base of the optic nerve. Both eyes are affected, but again, the right is worse. He said that this scarring (which he hasn't seen before) could have been caused by an infection (although Cora has never had so much as a mild fever, let alone a cold or infection) or possibly by something in utero.
The first of these two things, he sees all the time. The second, he's never seen in a baby. So, immediately we were referred to the retinologist. We see him Thursday afternoon.
Prognosis? Yeah, I'd like an answer to that one too. The doctor is encouraged that Cora appears to have very normal vision on the outset. She follows objects, brings things successfully to her mouth, focuses, swaps items from hand to hand, is beginning to crawl, etc. He is encouraged that she appears to have good vision. What we really don't know though is whether what is wrong with her eyes is done, or is continuing to get worse.
So, after we see the retinologist on Thursday it is very very likely that Cora will be scheduled for a more serious optic nerve evaluation under general anesthesia. This would be performed in tandem by the retinologist and the ophthalmologist. Whew.
The good news: There aren't any growths, tumors, or any other foreign bodies present behind Cora's eyes. While rare, that does happen. Also good news is that she isn't blind (we never really thought she was, but hey, count your blessings!)
I'll update as I get more infrormation. Right now I'm in a fog anyhow, just trying to digest what I've heard. I'm afraid for my darling baby for all the normal motherly reasons - you know, that she won't be absolutely normal, that she'll face challenges, that she won't be able to do vision oriented tasks like driving, reading, bike riding, etc. But just as we are confident that her very life belongs to the Lord, we are confident that He will give her the tools she needs (and us the tools we need) to overcome any challenge to His Glory.
That may have sounded well thought out, but I assure you I'm forgetting a lot. More to come as I remember it.