Cause I only want to write it once tonight

A cut and paste from my posting tonight on the CMV list-serv through Syracuse University:

Hi folks,
Thank you for all the information, and warmth, and love(-;

From the sound of our post, you might think that we're new to cCMV, but our son was diagnosed 3 years ago at the age of 4 months. We initially inhaled every bit of information out there, but at the time, we were so overwhelmed with our feelings, and setting up initial supports (therapists, appts w/ specialists et al)I don't know what I remembered. I was just trying to get down all these names with Latin roots...micro-what? cytomegalo-what?

I had originally posted here (or on Baylor's list-serv?), and connected w/ a mom near New Orleans. I tried to set up a playdate after reading her blog, and she had to inform me that her daughter had passed. This made me feel so hopeless and desparate...I had to opt out of the list-serv thing. It felt noisy and dark.

We've spent the last 2.5 years relying heavily on a great support system of therapists, teachers, and specialists. And had let go of so much of the fear just from watching him overcome so many of them...and I know this will be the case despite what future challenges lie ahead.

But recently, stumbling across CMV info about hearing loss (I NEVER read up on this stuff), I felt like our neurologist doesn't fully understand how the virus behaves, and that we were led to believe that his potential for future hearing loss was nil. This has made a tremendous shift in my thinking, and reliance on doctors for information. I've known since Elliot's diagnosis that I would always be an advocate for him, and I have been...where I felt like his RIGHTS as a child w/ spec. needs were concerned, I have educated and advocated. Where other parents struggled with their own diagnoses, I've championed early intervention...but as far as intimate knowledge of CMV, I assumed (wrongly?) that the damage is done, and have relied on medical experts to tell us next steps.

So now my thinking:
-I need at least one doctor who is intrigued by CMV and keeps up with the current research on it.
-We may need to consider Glancl? for slowing hearing loss.
-We probably need to learn ASL so we're not blindsided by the loss of "his good ear."
-I need to consider other possibilities for GI issues.
-I need to connect to the larger community, to learn what I can, learn from others' experiences.

Thank you for sharing your stories. I need to dig back through and connect with you...although I did check out Project Jack, and was moved to tears in my office in a broom closet in a hundred-year old New Orleans cottage on a street that rolls right near the Mississipp--and said, damn, that's just beautiful. Thank you for sharing that.

I'm coming around but I'm generally overwhelmed. I have three kids (my daughter Ana is 5, Elliot is 3.5, and baby Oliver is 5 months old today!), and I direct a non-profit childcare started by parents after the storm. My children go there, so it's highly motivating (and convenient where therapies, interventive strategies, etc are involved), and it keeps me very busy. My husband works nights so our lives are pretty cuckoo!

We have a blog that I'd love any of you to visit: http://lospininos.blogspot.com.

And Dr. Gail, if you're out there, can you refer me to a doctor in the Greater NO area? If I don't hear from you, I'll contact you through the website.

Thank you, everyone.
Emmy