C.H.
B.,
My daughter was also born with CMV, but without any symptoms yet (hearing loss can be progressive). I very, very strongly urge you to check out this yahoo group: http://health.groups.yahoo.com/group/cmvandcpparentlink/
I feel very fortunate to have found the group right after my daughter was born. There are many moms from around the country and even the world who are very welcoming and knowledgeable and give great advice and support. From there you can find a lot of resources. Also, we are lucky here in Minnesota to have a CMV expert at the U of M, Dr. Schleiss. Maybe you're seeing him already, but I bet he and his fellow would have ideas of resources for you.
Please email me if I can be of any help.
By the way, the moms in the CMV group are really trying to work on an awareness campaign because we think so many cases of cCMV could be avoided with education. I for one didn't even know what it was when I was pregnant. My personal plan is to try to hound the March of Dimes to add CMV to its awareness projects. I contacted our local chapter once but didn't hear anything, so I need to get back to work on that.
Best of luck,
C.