Eye Doctor Update for August

We went to the eye doctor for another check-up a couple of weeks ago. Addy's eyes are still doing pretty well. The left eye, which has been the weaker one all along and tended to turn outward before the surgery, is still somewhat weaker than the right and now tends to turn inward a bit.

We were instructed at our last visit (in late June) to resume patching her right eye to strengthen the left. That seemed to help at first, to the degree that I actually thought I saw her starting to use her left eye more than her right, or at least using them about half and half. I called her doctor's office to report this, and they said that we could stop the patching for a while if we wanted. Well... her favoring for the right eye came back after a bit, but we were not super consistent about patching.

After this last visit, we are back to patching more consistently again. The doctor didn't seem too concerned about it, though, and didn't increase her patching regimen to anything more than it was before. She basically said it's about trying to get both eyes to equal strength, and hopefully she will eventually realize that she can see better if she uses them both together instead of separately.

Her doctor also gave us a light prescription for glasses. I requested this, since Addy is slightly nearsighted and has a slight astigmatism in her left eye, and I thought it might help her get her vision more on track. Her doctor said it was worth a try. We haven't gotten any glasses for her as of yet, but we are hoping to do it soon.

Addy continues to improve in her coordination and motor skills... She has started feeding herself some and is finally WALKING! Yay!

And of course, she continues to be a little cutie patootie...

...Also, she apparently likes to suck on black markers. Thankfully, they were non-toxic washable markers, so it was all good. :-)

New Picture

Today Addy is 2 weeks post-eye-surgery! This picture is from a couple of days ago. The redness in her eyes is almost gone, and her eyes are looking GREAT! She started getting much better focus after about a week, and I have only rarely seen her eyes go in different directions since then. They still tend to do unusual things when she is not looking straight ahead (meaning not too much up or down... she usually does fine side to side), but I think there is still plenty of opportunity for that to straighten out with practice. In other words... Praise God, she's doing GREAT!! :-)

Eye Surgery Post-op Report

Well, I meant to post a little sooner, but I guess this will work. :-p

Addy is doing very well. Her eyes looked a bit more nasty than I expected after surgery, but still not anywhere near as nasty as mine looked after retinal detachment surgery, so it could be worse. The redness continues to look better each day.

As far as positioning of the eyes, we noticed right away that they are very different from what they were. Addy was pretty much incapable of "crossing her eyes" (turning them both inward), and now at least one of them is turned inward most of the time. This is normal, since they loosened the two outward muscles, and it may take a little while before they strengthen again and figure out where they're supposed to go. They also worked on one more muscle in the under part of her right eye, the tightness of which was making that eye appear more elevated than the other. So now that eye is floating around a little more up and down than it used to. But again, that is to be expected.

The goal and the hope is that her brain will eventually figure out how to make her eyes work together instead of separately, allowing her to have depth perception and 3-D vision. At this point, she is still mostly using one eye at a time (you can usually tell because one eye will be looking at you, and the other will be turned inward -- used to be outward), but I am pretty sure I've seen a few times where she gets them to both look straight. That's actually a little better than I was expecting, so I'm hopeful!

The doctor saw her the day after surgery, and she said she is "much improved" and is happy with the way things are looking. We have an appointment in about a month, so by that time we may be able to tell a little better how Addy's brain is adjusting to the new position of her eyes. It could take several more months after that to be able to determine the likelihood of further surgery, however.

We would appreciate prayer for her as she recovers and adjusts: 1) That her eyes would heal quickly and avoid infection, and 2) that her eyes and brain would learn to work together in the way they need to in order to avoid further surgery.

We are so blessed by how smoothly everything went with the surgery, though! Addy was mostly back to normal by the night of the surgery, and since the next day, she's been acting as if nothing ever happened! We appreciate all you who have been praying for us. The Lord has certainly been gracious to us in this whole process!

Quick Update

Everything went very well. Surgery started a little before 8 am, and we left the hospital by about 11. Talk about a quick turn-around! Addy slept for a few hours when we got home, then got up and has been slowly returning to normal. She is a bit more crabby than usual, but is starting to want to cruise around furniture and play again, which is fantastic! We go back for a post-op appointment tomorrow morning... I will update more after that. Thanks for praying and following along with us!

Addy's Eye Surgery

Addy is having eye muscle surgery as I type this.

Needless to say, our questions in my last post about her eyes were pretty definitively answered in the affirmative: i.e., she does need this surgery. I could see it more and more after I realized what the real cause of the problem was.

We appreciate all you who have been praying and continue to pray. I'll update later today to let you know how it went.

Dr.'s Visit and 3-Month Pics

Earlier this week, I took Addy to her first post-op appointment with her neurosurgeon. (She's already seen the plastic surgeon a couple times since surgery.) Nothing major to report... Dr. G basically just said she's doing great! He felt around on her head and noted that she already seems to be growing some new bone over the gaps left by the surgery, which is a very good thing. He mentioned that he is not concerned about gaps that stick around for a while, but if any of them get bigger or we start feeling pulsing flesh in the gaps (which would make the gaps bigger with the pulsing), that would be a problem. If she did have this problem, she would likely have to have another surgery (not as major) to fill in the spots with (I think?) synthetic bone. Fortunately, Addy doesn't seem to have any signs of these problems. Dr. G said they are pretty rare... only occurring in about 10% of cases. So far, so good!

And I thought I would also take this opportunity to post these pictures that I took a couple weeks ago, at about 3 months post-op. Addy is looking and doing fantastic!!

There's the cutie!

This is a very typical face for Addy... she looks so concerned sometimes.

Right side of the head, where the suture was closed.

Another right side shot. Looking SO much better!

Left side.

Left again. This is pretty much the only place you can obviously see the scar.

Top down. Left side is just slightly forward from the right, but overall MUCH more symmetric!!

And I finally got a real smile for the camera!

Showing how big she is getting by putting her arms in the air. Sooo big!

And that's all for now, folks!

New Pics and Eye Surgery News

I am a little behind on my pictures, but here is Addy from about a month ago, at about 2 months post-op.

Cheese!

Hangin' out

Sweetie :-)

She was modeling this outfit, here without the sweater.

Cutie pie.

Addy's head continues to look better all the time. The issue now is her eyes. Addy had an ophthalmologist follow-up last week, and it is looking now like eye muscle surgery is pretty much inevitable. This is what the doctor had said last time, but based on the subsequent opinion of her plastic surgeon (and his experience with cranio patients), and based on my own optimistic hopes, I thought we might be able to avoid surgery in the end. Unfortunately, the eye doctor found that her eyes are actually a little worse than last time, and after she spent a little more time explaining things to me, I think I understand why she is pretty convinced it is necessary.

Basically, my assumption has been that Addy more or less has a "lazy eye" that can be corrected with patching and sometimes other therapy. In actuality, the bone around Addy's eyes is shaped such that the muscles are pulling her eyes in unusual directions. This can be corrected by tightening or loosening the muscles to adjust the alignment of the eye.

Another thing I've noticed for a long time is that Addy often tilts her head when she is looking at things. I had thought this was a result of her head being misshapen and bigger (and heavier) on one side than the other. The doctor explained that this is actually also related to her eyes. (I had heard this can happen, but couldn't figure out why.) The doctor explained that there are three sets of muscles on the eye -- some that move them up and down, some side to side, and then another set that (I believe) affects the way the eye moves around in a circle. With Addy's type of cranio, it is common for these last muscles to be pulled in abnormal directions. So she believes Addy's right eye is actually twisted such that she need to tilt her head in order for things to appear level.

This explanation alone made a big difference in my understanding. It also explained to me why it seems that Addy's eyes often seem to be focused in the same direction, but when she looks up, they are always pointed outward from one another, and when she looks way down, they can make her look cross-eyed. If one of Addy's eyes is somewhat twisted in its socket, this makes a lot more sense.

The other problem is Addy's left eye, which tends to be pointed outward from the direction of the right eye. (You can see an example of this in the top picture above.) This is what I had thought was the main problem, that might be correctable with patching. Apparently the doctor thinks that the muscles of her eye are actually pulling it outward as well, and will have to be adjusted in order to align it. (Or perhaps the actual socket is misaligned because of the unusual shape of her head? I'm not sure.) This one still doesn't completely make sense to me, since Addy often does have her eyes pointed in the same direction (i.e., her left eye is not always pointed out). The doctor's explanation was that the eyes tend to point inward when you are looking at something close, but when Addy focuses on objects far away, her eyes point outward. I haven't noticed if this is always true, but it seems probable. If it is true, Addy will have to have surgery on the muscles of both eyes.

Addy has her next eye appointment in the first week of May, a couple weeks after her first birthday. If everything is still as it seems now, she will have surgery shortly thereafter, sometime in May or June.

While we would love to see Addy's eye issues fixed, we are not really looking forward to this surgery. Not because it is difficult... compared to the last surgery, it sounds like a breeze: in and out the same day, and she should be acting like normal again pretty much as soon as the anesthesia wears off. The problem is that, as with any surgery that involves muscles, there is a fairly high rate of failure -- that is, failure to achieve optimal results. There is some discrepancy in the exact statistics, but the source that Addy's doctor provided says there is about a 20-40% chance that the surgery will not achieve the desired results. I have heard from and spoken to a number of families who have had this procedure done, and it seems that in most cases, it is usually necessary to at least 2 or 3 of these surgeries before the problem is completely corrected.

So, we would ask that you pray for three things:

1) That the doctors would be able to accurately and definitively determine whether Addy needs surgery or not.

2) That if she needs surgery, everything would go smoothly and without complication.

3) That God would give the surgeons wisdom and skill in this operation, so that (if it be His will) we could get this problem corrected the FIRST time and not have to have any more surgeries!!

Thank you all for following along with Addy's story and for praying with us!!

CT Scans & An Update

I got copies of Addy's CT scans at a follow-up appointment today. This was her first scan, from September. Note the off-center soft spot at the top of her head.

Another view of the scan. Note the line running down the side of her head. That is what an OPEN suture looks like.

And this is the right side of her head. Notice you can't even see the suture line. It is completely closed up. (The little dent-like mark on her forehead is just a marker, not actually part of her skull.)

And this is what her scan looked like a couple days after surgery. Kinda freaky looking, but amazing!

Left side.

Right side. The patchy spot is where the surgeon filled in an open area with a bone paste. Pretty fascinating if you ask me!

And here's what she looks like from the outside, 4 weeks post-op (last week), sporting a new hat from her aunt. :-)

Addy is doing great! Dr. M seemed particularly pleased with how Addy's surgery turned out. He said her head is put together a lot more smoothly than a lot of kids he's done. I definitely think she looks great, and I anticipate it will only get better! Now if we could just figure out how to avoid eye surgery... :-)