ACC and/or ventriculomegaly Mamas

lacey_ja_r

I have found s few great resources for those of us with so little information on our LOs futures'.

The first one is the ACC Network.  They have a great website with a list serve but also if you contact them through the following email address there is an abundance of information they have to share.  I revcieved emails of information but just the other day I recieved (via snail mail) a packet about an 1.5 deep of articles, medical journals, parental testimoines of their child, copies of studies the Network has done.  The packet also included a directory listing of other dx ACC people(children) in your state.  There was also a children's picture book that explained the dx, (future use with your child, but maybe also his/her classmates, siblings, ect.).   This is all free just email your home address to the Network requesting information   um-acc@maine.edu

 The other resource is another message board but it is specifically setup up for parents of babies, children with these two dx.  It is a great place to read about others' successes and also trials and how they coped.  The support there is amazing.  It is international so there are plenty of view points and experiences.  The website is:

https://www.i-am-pregnant.com/encyclopedia/Pregnancy/Ventriculomegaly

Hope this helps you through any tough days you may have...it has really helped me in the last week or so to feel prepared.  It has helped me feel like I am doing something for my LO and his needs.

Justinlove

Thanks!  I got the packet from the ACC network and joined their listserv (lots of people on it and it seems pretty active if you haven't joined it yet).  Thanks for the other site--I've bookmarked it for later.

We have a few appointments coming up so I am hoping we are able to get some more specific information about our child's prognosis, however, I have a feeling we will get the standard "We just have to wait and see..." I know they can't look into the future, but I wish they could (but I know every parent feels this way).

lacey_ja_r

Justinlove- I have been keeping up with your blog.  It is so reassuring to see little Lilly doing so well.  Good luck with your appt.

mrs.beauprez

Thank you so much for posting this. I have emailed for the packet and plan on checking out the sites also. Hope you are coping okay!