Avery 12 weeks 2 days

Today optho appt was SO much better than last week. The doctor spent over an hour talking with Carl and I and actually listening to what we were reporting about her eyes at home. What a drastic change from last week. BTW, the doctor we saw today has had several complaints about the Dr. from Wilmer from other patients - so not just us. So, we have good news, and bad news, and some in between too. The good news - is the doc at Hopkins was wrong - she does not need glasses - her farsightedness is well within the normal limits for a child. After two exams from different opthomologists - we are confident that the measurements are correct and she does not require glasses now. The bad news is the doctor suspects a very rare syndrome called Duanes - basically it sounds possibly a little scarier than it actualy is. Basically - she may be missing one of the nerves to the muscles in her left eye. So she has limited movement of the left eye - It never goes past the midline - she cant move it outward toward the side of her head. If she has this, she will always have it - they can do surgery to give her a little more range of motion, but she will never be able to look to that side. Kids and people with Duanes do just fine in life - they just have to turn their heads to see peripherally. The in between news is that there is no definitive test that they can do for Duanes - it's just based on clinical findings and right now she is a bit on the young side. He has also requested an MRI just to be sure that we aren't missing anything more serious - that may take some time to get scheduled since she is so little she will require anesthesia. Also for now we will be patching the right eye for 2 hours a day in order to exercise the left one and see if the motion improves.

Have I yet metioned how completly DONE I am with rare issues. Seriously, Tay-Sachs wasnt enough? Im doing my best to cope with all this, but it's really tough sometimes! It's so upsetting that there is anything at all wrong with Avery.