Parent of a toddler with Erbs palsy

[Amysue]

I am new here. I guess i will start with that. I have a beautiful daughter that suffered her injury at birth. She had surgery at two months and has limited use of her right arm. i worry for her everyday and how she will adjust. She, however, is the happiest, sweetest little girl that can do anything. She is only 2 and 1/2 and has no idea she is any different. I would like to join a support group for me and for her to be around kids she can relate to once she gets a little older. We live in Oklahoma City and I am not aware of any support groups here and i have done a lot of research including calling rehabilitation facitlites to see if anyone has left any information and they have not.

[cherie_hohertz]

Hi Amysue!

I'm Cherie, mom to Sarah who is 3, and we live in Dallas.

I'm not aware of any support groups in OKC. I know there are some people that live there, but they have been coming to our North Texas gatherings.

Feel free to email me (chohertz@dfwbpi.com) and I'll see if I can get you in touch with some people in your area!

I'll look forward to hearing from you.

Sincerely,
Cherie Hohertz
North Texas BPI Support Group

[AlannahD]

Amysue:

There is also a support group in the Kansas City area. I could get you the information if you wish. Currently, Midwest Brachial Support Group is planning their summer camp, set for June 2, 3, and 4. I have a granddaughter who just turned 3 who has LOPBI. I could you more information if you are interested. Camille

[admin]

The darnest thing about our BPI kids is that they are always the happiest, sweetest kids. My kid had a decided frown until she was about one... I think that they realize that they survived something, a difficult birth. My BPI kid at five is teaching me what destiny means... My BPI kid has this determination for life with huge questions about who was the first person to live, and who willbe the last. My kid knows kindness extremely keenly. She wakes up every morning and she just wants to break down the walls of our house in a determination to be in life.....

[admin]

I just wanted to let Amysue know that I am from Oklahoma. I tried e-mailing you but came back failed mail. Please e-mail me if you wish to talk.

[Amysue]

my email is amystery13@msn.com I would love to talk with you!

[admin]

my zak is 3 and we live in minnesota just outside the twin city area. zak is also a happy boy and he is normal in every way. i think it is harder on my 7 year old though. jake asks alot of questions, just the other day he asked whay zak's arm was shorter. i did not think he would notice. anyways, zak had surgery when he was 71/2 months old.

[Amysue]

Can i ask what kind of surgery. I am not familar with many. My daughter had nerves transferred from the back of both of her legs to her right arm. The surgeon said that she suffered three separate ruptures. Her arm at last measurement ( 8 months or so it has been awhile, i dont like to make her feel uncomfortable or make her place any importance on the length ect) she was slightly over one inch shorter than her left arm.

[admin]

he had a nueroma(scar tissue) removed from his c5 c6 nerve. there was a ball of hard tissure there thought to obstruct function? his injury is c5 c6 and partial c7. he will probably have another one soon. they did not know what was wrong exactly until they went in there. all i know is now he needs more surgery before the ball socket from his arm going into the shoulder gets anymore flattened from bone rubbing on bone and joint falling out and no longer fitting. we were told last nov to wait until march. i had surgery so we didnt go but will soon. i guess i am afraid. now i know how it feels to go through surgery i am afraid for him. i panic alot and am very fearful and aware of fear 100% more then i ever was. i know i need zak to have breathing room, but i think he is always going to get hurt.