United Brachial Plexus Network, Inc.

Im sorry if my post made someone mad. I did not know that they had rules to what you can or can not say. But if you do that, what good is your opinion afterall? I thought that if someone didn't agree or had a different view that we could say how we feel. Guess I came to the wrong place. Ashlie

Ashlie, I do not believe anyone was offended by your views at all!

Lenni

Back to the original discussion here--I think, at least. I would be very happy to see TCH publish an updated version about what they are finding and doing. However, that said, I am also very happy that they can explain and explain anything I ask them about this injury. And they follow my kid regularly, not sure about the rest of you, through videos, visits, phone calls, what have you, gathering information about what is going on, what worked, what didn't. And each time she has had surgery I sought their opinion because I knew something was going on, loss of function, pain, sloping shoulders, etc..there was never any surprise on our part because we already knew something wasn't right and her other docs would notice off things as well. They just didn't know what to do about it. And each surgery, the pros/cons, protocols, thoughts have all been discussed with them in great detail in regards to my child. Perhaps they are simply gathering information and sharing and we don't know about it. Sharing doesn't always come in a formal package. We could ask them I suppose. As far as experiemental surgeries, they all kind of are and are not. For instance, we have a doc in my area that just did a fellowship in pediatric orthopedic surgeries. he has been a surgeon for years and years, but he left his practice to go study on the kids for more experience. When he first came back we saw him doing some surgeries that we had maybe heard about but you had to take your kid to "the big city" for those kind of things. And they seem to be working, and he is doing more and more. Perhaps I should say he his HELPING more and more kids each day. And he gets better with each one and he learns new things and thoughts with each one. I am pretty sure he is just gathering what works for him and not planning on publishing his expert opinion right now, he is just helping the kids. That doesn't mean he is not sharing that information with his local colleagues, obviously, because he sees more children every day. Somebody has to be hearing about what he is doing and learning, right?

As far as accepting the injury. Well, it gets better most of the time but I am no where near where some of you are and way beyond some others. I'd like to be up there at the top, with Karen and Ashley,etc. But I haven't made it yet. I still worry about what difficulties she will face in life, how much hurt she will have to suffer because of this injury, things like that. But then again, I have a 28 year old that i still worry about and the only disability he has is having a pest for a mom! Was this the worse thing that has ever happened to anyone? No. The worse for us was watching her during the CPR and dying inside because I wasn't sure they could save her. But they did and I think she is perfect. BUT that doesn't mean I don't and won't do everything in my power to help her gain a better life, whether it be to provide her with the opportunity for recovering surgeries or teaching her proper manners, good citizenship, education and loving hands to guide her through life. Wish it could have been different however and I didn't have to make those medical choices, but she can't make them for herself right now and for the ones we chose to go with waiting wasn't the better choice. Sighhhhh, these discussions can be so informative, yet so emotional. I am scared here in "Holland" and sometimes I wish I could go"home" but I have made new friends and this is where my sweet pea lives so guess I will just make the best of it!

Christy makes some very valid points here, I think maybe we should all think for a minute and remember that once upon a time -
some body's child had to be the first -
the first nerve graft, the first mod quad, the first osteotomy, the first caps lengthening ( did I get that correct?)
Those of us whose children have benefitted from surgery, and I include mine here, should say a quiet thank you to those parents for having faith in the doctor who performed the surgery.
Karen

I also must note because of the surgery preformed on the the children many of the "expert" doctors have been able to help adult/obpi ... which a few years ago was un heard of...they would never touch anyone with such and old injury.... even if we are not candidates for surgery for whatever reasons we still gain from their experiences and they have helped us because of their experiences with bpi.

If they can work on such tiny arms and necks they can surly work on the adults where there are bigger working areas... so we all gain from experimental type surgery.

Kath

TO SALI,
I have 4.0 year old son, what is your point. I did not call anyone any names or accuse anyone personally of anything. So why don't you practice what YOU preach and quit "spewing" your own "venom." "Censor" your own posts and do not ever think I would be willing to post my email for this board. I have read what has been sent to others and it is downright vicious, I wouldn't give you the satisfaction. Why don't you just take a deep breath and move on for Pete's sake. I refuse to apologize for my opinion. And if it stung than I welcome you to not read anything with my name attached. And by the way, a wise person once said, "expressing your opinion is NOT always the best solution" as well as, "Please don't put the rest of the reader's here through your rampage. We're all adults here, let's not conduct ourselves as if we're still in high school. And PLEASE keep in mind that there are MANY hurting people here....." AND THIS INCLUDES ME!!! Please leave me alone.

raarrrr Take a bite of that!

Okay, Sali,
You want to email to me, email away!!!!!

Well this was a nice discussion of different views until now. Let's move on.