United Brachial Plexus Network, Inc.

Hi, Tami. Welcome to the board. I think it's great that you want to start a group, but also think you'll find a lot of great support here too. I think everyone that replied here already made some great points about the different focus and purpose of the boards. There are far too many people on this board for a lot of personal discussions and the ability to really get to know everyone. You'll get to know some better than others by exchanging personal email messages and / or meeting at BPI gatherings, etc. However, in Tanya's group, it's much more personal and you really all get to know one another. I'm no longer in the group, but if things haven't changed, it's very different from this group. There are a lot of messages and it can get very time-consuming (esp. if you're visiting more than one board and trying to keep up with it all). Just like this board or any other board, it's not for everyone, but for those who want to be there, it can really be helpful. So, I hope you check it out. There are also other personal websites that you might want to checkout as well and UBPN has a list. Go to the home page - Resources - WebLinks - Family/Personal Websites and you'll see "Tanya's BP Page" on the list. You might also want to submit your site to UBPN to add to the list. BTW, I hope you take some time to really find your way around this entire site. There's a lot of really helpful info. here, esp. in the Awareness section of the site. Well, again, welcome! I hope you'll stick around and if you join Tanya's group and / or maintain your own group, I hope that's helpful as well. Ask away b/c there are a lot of people who visit this board. Take care.

-Tina (Mom to Nicole, 3 y.o. w/LBPI)

Thanks Tina, I really appreciate your kind words. I would love to check out Tanya's group but am afraid of not being able to keep up with the emails. I am mother to four and when school starts, I work in Special Education with Special needs kids. The summers are great but once school starts...wow...does life get crazy. I was a stay at home mom for 12 years and last year was my first year back to work.
My question if anyone can answer it is this.....why is there not enough information out about BPI? Why is it not in the books you buy about having a baby?
I feel like if there had been information out there when Ky was born in 1995, it would have made the difference, this is so hurtful to me because I had a history of Large babies AND the same doctor delivered his brother who was 10lbs only 15 months earlier. Who had some of the same troubles, but yet we WERE NOT TOLD about it, we only discovered this after we requested my OB records from the hospital so that we could take him to a different doctor.
The more I find out about BPI and the more I meet the most wonderful people who lives have been effected by it, the more I realize how many have been effected by it.
I am going to try to start a support group in my area for BPI and I plan on getting out and helping to educate my community about BPI.

Thanks!
Tami