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Hello and thanks for your question. By ONH do you mean optic nerve hypoplasia
I'm sorry about your son's unfortunate condition. As a parent, I can only imagine what angst you must be going through. The damage to your son's optic nerve (hypoplasia) is an in utero event, meaning that the insult to the optic nerves happened once, while in your uterus, and is not an ongoing scenario. Because of that, I would not expect his vision to worsen from this. It may be that his combination of aging and hearing loss has turned his attentions elsewhere to the point that he is not as interested in the guitar playing as he once may have. In addition, while I would not expect it to make much of a difference, there is a chance that he has developed a refractive error (need for glasses), that may help the vision, if needed, in the event that the baseline vision potential is not overly poor. But I do not expect this to be a progressive vision loss from optic nerve hypoplasia.
Does this information help address your concerns? Does this make sense? Do you have any other concerns that I haven't addressed?
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Oops! Sorry about that gaffe! Those are all good signs that you have mentioned. I think, though, that what you may be noticing is the disparity between his vision and the rest of his development. While that disparity was small when he was a baby because he was able to do very little then, now that he is growing and his physical development is increasing relative to his eyesight, it may seem as though his eyesight is backtracking, when it just may be that it is not keeping up with his physical development. Does that make sense?
I think the fact that his alignment is straight and that he has appropriately reacting pupils and also that his nystagmus is improving, these are all good prognostic signs that maybe his vision is improving. Unfortunately, these aren't reliable indicators as to the level of his vision. You are correct, though, in that these are usually good signs that point to hopefully improved visual function in the future. Sorry I can't give you any more specific information than that; it would just be supposition and I don't like to spout out supposition without any facts to support it.
Does that help?