I took Owen to the eye specialist this afternoon to get his eyelids assessed. When we went to the opthamologist a couple of weeks ago she mentioned that in addition to his optic nerve pressure there was also a possibility of his eyelids obscuring his vision. His eyelids have never opened very far, known as a condition called Blepharophimosis; it's indicated by small eye openings horizontally as well as verically, a low nasal bridge and some other stuff. Apparently it's quite rare. How lucky for us to have won THAT lottery.
The surgery involves putting in a small piece of silicone tubing into each eyelid crease, then attching these to the muscle above the eyebrow which controls the opening and closing of the eyelid. Apparently to do this in both eyes will take several hours and he'll have black and blue eyes when it's over. Whooopie. He'll also have to stay overnight at CHOW.
Now the big, adult decision we have to make is whether the major benefit to this surgery is going to outweigh the major drawback. Owen will certainly be able to see better and he won't have to tip his head back all the time, but on the othe hand... he will no longer be able to close his eyes all the way. Ever, unless we completely reverse the surgery. So while he will still be able to sleep, whoever is looking after him will have to make sure they put ointment on his eyes during the night to stop them drying out. Yes, it's inconvenient for us, but what isn't these days? No, my concern is him having infections in eyes that can't blink properly and in his general appearance as he ages. Can you imagine sleeping next to your boyfriend for the first time, only to discover his eyes don't close? Freaky. Apparently his eyes will be fully open immediately after surgery and will then learn how to close partially as time goes on. They won't ever close all the way though.
It's at times like these I feel at a crossroads. I want to ask Owen what HE wants, but that isn't possible. When he was tiny we made the decision to place a G-tube, but I've regretted this ever since and have wondered if his oral aversion to bottle-feeding was a direct result of it, not in spite of it. And now we have another decision to make that could affect his development. We're being told it will help him, because the head-tipping is so acute it's preventing him from learning how to sit and stand, but how do we know this? I mean, we were told the G-tube was a must-have, but now I'm not so sure... what if this is the same thing?
Even though Mike and I talk about this stuff, because he's not at these appointments with me I often feel very alone. Very pressured, very alone and sometimes very unsure. I can't wait for the day Owen is old enough to tell me what HE wants.