United Brachial Plexus Network

We have'nt been on the board much... I have a 10 year old son and we have been in contact with some through email and Ohio picnics. just thought I would post here.

We were recently at the very first Cincinnati Children's Hospital BPI Clinic... They seem to be very hard at work trying to find a middle ground between their own conservative background...this area.. and all the possiblities.

But what was so hard was to see the little ones... and the bewildered parents and grandparents. There are so many things they need to know. It brought it all back like it was yesterday. I don't know how much to tell them I want to be positive... but there are so many things that are scary and most are terrified of docs...and questioning their own judgement... Everybody laughs and jokes about where you are now as adults... but as the parent it has been a hard road... and seeing and hearing all that is to come for my child even now at ten years into this .... HARD... we are doing everything we can..but it takes a great deal of our family resources and time. Our other children sometimes get the short end. I have very little time for other pursuits. I'm excited about all the help these young babies and parents can get though if they find the right places.... We didn't have that. I want so much for all of them.

Michael is ten and just starting to hit his major growth spurts... We are having trouble keeping the arm stretched and loose so he can use it the best possible... He has braces and excercise , estim, etc.. but we lost some shoulder function with his last growth even after surgery.... Are their any adult men who can tell us what to expect so we can help him. Would TENS be good at night for him during this period?

Thanks for letting me ramble

Sunflowers

I really don't think that is rambling. That is the purpose of the support boards... to talk out loud in a group that really understand.

I hope some of the men who are adult obpi will post in response to your post... I don't know how different it is for males vs females growing up...

Girls have one set of issues and I would suspect boy's have other important issues...

Let's hope some of our lurking adult/obpi males answer...

In the meantime try to keep your chin up ... many of us who are adult/obpi never realized how hard this was on our parents until we discovered all the information here and realized that our lives were a series of play that equaled therapy...

And all will tell you how grateful we are for the care and drive of our parents....

Kath

Don't feel like you are the only one who has ever "rambled" on the board. We have all done it. Some of us more than others and no one has ever told me to shut up or be quiet. Wouldn't do them any good anyway. LOL

I'm LOBPI age 55 and really have no idea how my parents handled my problems. I only wish my mom was still here to ask her. Of course I wish she were here for mnay many reasons as I do miss her. Keep in mind just you being there is the real answer. No matter what you do or say or how you handle things, you are there!!!!

If I look back, I don't remember my parents way of handling it as they never spoke of it. I didn't realize anything was really wrong until I was probable 10 - 12 years old. I just figured I was right handed and my left didn't work as well. I do remember mom and dad telling me, when ever I did complain about something hurting, that they were growing pains. Not that I understood what that meant, but I guess since my parents knew and had an answer everything would be ok. How's that for faith in parents? Anyway, remember that just being there is the most important thing and know that any decisions you make will be the right ones for that moment in time.

Peace and Blessings Sharon