We saw the orthoptist today and the conversation went something like this. Edited for brevity
After a bit of testing...
orthoptist: his right eye seems to be developing normally
me: should we patch him to see how his left eye is going?
orthoptist: he won't be able to see
me: I think it is worth a try
orthoptist: there is no point he wouldn't be able to see out of that eye because it is too abnormal
me: "you're wrong" (my exact words)
orthoptist: pardon?
me: "you're wrong!" (more exact blunt words)
orthoptist: ok, lets have a try to see what he can see
After a bit more testing with his right eye patched...
orthoptist: I am pleasantly surprised with what he can see with his left eye
me: it is a shame that he is not getting any vision from his left eye when his right eye is open
orthoptist: no he is getting peripheral vision from his left eye
me: I don't think so
After a bit more testing...
me: wow you are right!
After we saw the orthoptist we saw the ophthalmologist (eye doctor) and his general comments were that he was surprised as how the patching had been so successful in improving his vision in his left eye and that, even though his right eye was still the most important eye in terms of real vision for Raphael, it would be nice to get as much vision out of the left eye as we can.
He stressed the importance of not patching Raphael too much, so as to hinder the normal development of his good eye, but our current regime of 30-60 minutes of patching each day (when we remember, ie more like every other day) was not too much and as it had been so successful so far he encouraged us to continue with this method.
The bad news is that since the patching seems to have been at least partially successful we will have to keep on doing it. ie Because we have done all this hard work, we have more hard work to do [sigh].
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3 comments:
I remember the patching days very well...the good news is that it isn't forever! They get to a certain point (age maybe, I can't remember now) where the patching is no longer useful because the development is finished. We did it for quite a number of years though. And yep, it IS hard work!
Glad to see the parents out there questioning the professionals when they KNOW they're not right about something! Keep it up!
I came across your blog while doing a search on some medical condition.
I am absolutely charmed by Raphie as well as the parents themselves!
I don't think I can relate to what you, as the parents, must be going through, dealing with your son's condition. I do, however, sense happiness and joy that the boy brings to your life.
Seeing such dedicated parents is almost like a spiritual experience to me; very fulfilling.
Raphael is one of the most gorgeous babies I've ever seen! I love reading about his new adventures and I am concerned that you went almost a month with no posts. Is everything okay?
As a new mom, myself, I'm lending you my support and sending positive vibes.
I wish you all the best!
Paulina
Thanks for your encouragement.
All is ok at the moment. There are just other busy things going on at the moment that has meant that I have been a bit slack in blogging.
Paul
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