United Brachial Plexus Network, Inc.

I discovered this site in 1997 when my son was born with left BPP. I am such an emotional person I haven't been able to think about it without crying. All of the therapy, Neurological and Dr visits have been difficult but necessary. I have not been in denial about the injury - yet I have not emotionally dealth with it yet. My son is now 4 and no matter how I feel I have to push myself to deal with this. I have feelings of guilt because I attended the Social Security meeting in Washington D.C. and saw so many other BPP kids whose injuries were worse than my son's. Some of the kids were just out of surgery and a couple of kid's arms were completely limp. It made me feel lucky that my son was not much worse than he is and also guilty for the same reason. Now, my son understands his injury and is starting to hate his arm. He is not using it as much and the difference is the size of his left arm is becoming noticeable because of his rate of growth overall. Since the Washington meeting, I have been taking my son to therapy and performing stretching and therapy at home on my own. However, our insurance is denying the therapy he needs in order to keep the ability he currently has. I have not fought as hard as I could with insurance, but now I am feeling driven to do so. I guess I am writing all of this now because I haven't connected with anyone who has a child with BPP. Also because I am coming to grips with this injury and want to push to get as much support as I can. I read on the home page that a chat room will become available soon. I am so looking forward to the opportunity to share experiences with other parents in the same situation as me. If anyone has any words of wisdom or tips on where they think I should go from here I would love to hear from you. Sorry for the long message and thank you for listening.

Stephanie
Wilmington, DE

Hi Stephanie...

We are not too far away from you and would love to invite you over sometime...maybe go swimming with the kids?

The chat room is on wednesdays at 10 pm EST.... the location is www.delphi.com/obpi/start - all you need to do is email me at francine@injurednewborn.com to request an invite to it.

I was at Washington DC meeting too btw. And I know what you mean about seeing the kids. Every time I go to a picnic and I see kids better and worse than Maia, I have those same feelings you do.

It's not an easy thing.

About the therapy... what about Early Intervention/Intermediate Unit ? This therapy is state funded and is done at the school level. Also- what about seeing a brachial plexus specialist? They can write you a scrip showing that it's medically necessary.

Fighting for the rights of your child takes courage and stamina and anger. Put it all together and get your facts in line and we become like lionesses! Get as many medical opinions as you can that this therapy is VERY important. Pr. Gilbert in his new site www.obstetricalpalsy.net talks about how intensive therapy until the arm stop growing is most important.

I am sure that others, once they see your post, will come forward with many ideas as well.

You're in good hands - glad you are here. And just throw the guilt away because all that does is sap your energy which you need right now to get this for your child. OK?

Email me and I'll give you my phone number and get you into the chat room and we'll talk more.

-francine

www.injurednewborn.com

I e-mailed you
Beth