I am a little behind on my pictures, but here is Addy from about a month ago, at about 2 months post-op.
She was modeling this outfit, here without the sweater.
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!!