On the up side he does very well, reads, writes, plays sports, etc. He had goniotomies when he was 3 which drained the fluid and relieved the pressure. We, too, have his pressures checked every 2 months or so. He is also now on drops which have kept the pressures down to around 14. We are hoping and praying that indeed this will happen for him.
Congenital glaucoma is extremely rare.
I was happy to find this web site and will keep up with the replies from others. I don't know anyone else who does.