When Willem was an infant he gave the impression that he was not focusing on objects! His eyes kind of floated around, not like a lazy eye but also not a steady stare. Plus when he would be in a bright light he would roll his eyes up in his head. One of the things that was part of his diagnosis is that he also has no outward lateral eye movement(almost always present in moebius syndrome). As an infant I remember trying to get him to track a toy with his eyes when he would he would move his entire head to fallow the pattern. Actually I think he still does, i will have to try that tomorrow with him! As he got older and he did appear to be focusing steadier his crossed eye's became more obvious.
I remember being very happy when we realized for sure that he could see... there was not much doubt but with his face not changing expression and his eyes not showing a focus there was a question! I don't remember the "ah ha" moment but I do remember us asking each other "is he seeing us? he has to be right? " And he sure does see, he will now pick up the tiniest crumb and say "here mom"!
As for the rolling of the eyes in the sun as an infant we discovered it was because he could not squint. I would keep his face covered keeping him in the shade or in a covered carriage or with a hat and i tried all sorts of sunglasses ~ he would not keep on the type that wrapped around his head. Since then i have found the greatest sunglasses he wore all last summer and since as even though the weather is freezing here it can still be sunny. The glasses are by JULBO ~ looping sunglasses . What i love about them is that they are symmetrical so he can take them on and off and they are never upside down. They are very dark so they actually work. He can't pinch his fingers in them because they don't close. They are almost undestroyable as Willem has pulled at them many a time. BUT i did step on them once, that did cause the lenses to pop out BUT i actually was able to push it back in. I did buy a new pair at that time for back up though because we really can't be without them. When we are out everyone calls him a rock star so yes they are even cool looking!!
We have seen a few different eye doctors which all gave us different plans of treatment. But they all agreed that his eyes were not being scratched from his inability to squint, or do a complete blink. I believe that is because as i mentioned earlier he does sleep with his eyes closed and he does produce tears. As he has gotten older there have been times when he says his eyes hurt and i do give him moisture drops. As well as when the heat is on high or the air conditioning i do put Lacrilube(eye ointment) in his eyes at night just to be sure he is comfortable as he doesn't really fight it, I think that it is helpful!
As for his strabismus (crossed eyes) there were doctors that told us to wait until he is 8 years old and then the Dr. we went with was concerned with amblyopia setting in when one of his eyes would stop seeing if it was not being used. So we started patching his eyes for a while one at a time so that the unpatched would get stronger he was not crazy about keeping it on. We would have good and bad days, in the end on April 18th of 2007 (21 months old) Willem had the strabismus surgery to straighten his eyes. After the surgery the doctor said it was
tighter in there than he had anticipated but that all went well. After the surgery about a month or so Willem would say his eye hurt and cover it. Upon seeing the Dr. we discovered it was not a physical pain but one of discomfort as to how his eyes were focusing. So he prescribed the patching again which we did and he loved having it on.(my Que that it was working!) After a few months of that we weened him of the time he was patched. The crossed eyes still being present not as bad but enough for concern in Oct. of 2007 the Dr. speaks to us of needing to go in for more surgery. I ask about glasses, he saying 2 year olds generally don't keep them on for this but we tried and he keeps them on! They are prism glasses so they are not correcting his vision but giving the illusion of how things are placed in space by how the light hits them. Again they are not correcting the strabismus but they are keeping his eyes working together! Unfortunately in January of 2008 even with him keeping the glasses on he wants to try to straighten them further I think maybe we should get a second opinion, if he doesn't have the cranial nerve there working will the surgery ever work????That is the story of Willem's eyes up to date. They are also a wonderful hazel color like his dads and even though he cannot smile people say " oh i can see he is happy in his eyes!!" And now that he is older it is also in his great laughter which I must say in contagious!!
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