United Brachial Plexus Network, Inc.

Just a note to all of you coming to NY, your info and directions are in the mail, and you should receive them by Friday or Saturday. Sorry for the delay...
As for the new format of the picnics...let's all just go with the flow. And I know we can all get something out of the event and have a great time.
Francine had a great idea to pair up with another family during video time! And feel free to have one parent explore the zoo or make a poster with your child while the other listens to the lecture. And then you can switch. (our room in NY is nice, but not huge!!!)
Thanks for everyone's patience and understanding.
claudia

WOW!!! This is the first I am hearing about the NEW eval procedure. I have to say I am very, very disappointed. I just dont understand. When was this going to be explained to us parents. I was NOT told to bring a video of my child. To tell you the truth I wasnt told anything so I just assumed it was an in person evaluation like always. It would be nice to have someone explain this whole thing to us. I would have just went to the picnic expecting an in person eval. I am sorry to write this but I am very upset. The picnic is a week and a half away and this is the first time I am hearing anythign about this. I just need to let off some steam. OK, now what do I do---start video taping my son??????How long should the tape be??? Do they have a tv and vcr to review them???

OK...

Now does this mean my husband has to talk to Dr.Nath and I can't be present....LOL....

What about the adults who are coming to the picnic does this mean they will not be able to speak with Dr.Nath either... not for an exam... but some directions.... expecially for those adult who have never been evaluated before this will be a big loss...

Who will mind me while Ralph speaks to Dr.Nath??? LOL...
I know I will play with Francine and Nancy and some of the grown ups... LOL...


Kath

Julie, I am the director of the San Diego Brachial Plexus Network in Southern California. We had our picnic last weekend with Dr. Nath. The pinic was a huge success. Dr. Nath spoke to parents and caregivers one on one Friday and Saturday. Everyone was very pleased even though he could not touch the children and give evaluations. Some people brought videos and other, like myself just talked to him. All my questions were answered regarding Gabrielle's upcoming Mod Quad and the progess she has made so far. Dr. Nath is so knowledgable about BPI I don't think he really needs to see the child to educate the caregivers. We were so happy he volunteered his time to educate all of us on BPI. The one on one discussions really give people a chance to educate themselves on their own child's progress verses a lecture type set up. I'm sure you will be very pleased after talking with him and be glad you did. If you have any further questions regarding our picnic please email me at tinaarvizu@hotmail.com

Alice - i know you are upset by this but the information just got to us. I know that we (picnic coordinators) wanted to get the information straight before disseminating it. They waited patiently for the correct paperwork and it just didn't happen in time and they gave it all the way up to this moment. I hope that you can all forgive 'us', everyone is just trying their hardest to make things work out as best as possible.

As far as the tape - don't make the tape very long but just show the important points - a couple of each type of movement (arm up, internal external rotation, etc.) ...try to get it with a shirt off. There will be a tv/vcr set up (right Claudia?) PA will have a tv/vcr set up. I'm sure chicago will, too.

See you in NY! It's going to be really nice seeing everyone again!
-francine

In response to Tina's post....at the PA picnic we are having both a lecture/slide show presentation and the ability for private question and answer time with Dr. Nath (parents only). The lecture/ slide show that Dr. Nath does is truly incredible - he shows microscopic nerves / muscles - affected,unaffected...seeing the difference - well it is just amazing to see it like this. I've seen it twice already and it's something I could watch over and over each time getting more out of it. Hope you can come if you're nearby!

I am a little confused...is it that the temporary license/paperwork has not come thru as Francine said....or is there some other reason for this change. If it was only a paperwork issue in NY, why then would the other states picnics be doing the same thing? I can understand the "no touching the children" policy, but why can't they be present at the watching of the video. Sounds a little strange to me.
Michele

I too feel the need to vent. I just got back to work today and read all the e-mails. I am extremely upset. I think from the beginning it should have been made known that as of now there will be no evaluations with the child, just video, but that you were trying to work out the paper work and hopefully it would be complete before the picnic. Basically we have nine days to get a video together. I think that is ridiculous. My OT also planned to join me and now I feel it is a waste of her time. She wanted to go over my sons ROM with Nath and get his opinion. My son had surgery in January and I was really hoping he would be able to tell me what he thought about his progress to date. I am extremely disappointed. Is there a list of motions that we should have our children do in the video. We should have been better informed.

Kathleen, NOONE will be able to keep you out of trouble while Ralph speaks to Dr Nath-too funny, what ARE you going to do ! haha
Is it that the children are children? or is it that he cant see them because they are patients? Surely Dr Nath could have an informal conversation with YOU kath, must be someway to bypass that one...
I too am curious about the changes, as everyone probably knows I openly do not advocate the exams at picnics to be used for evaluation purposes anyways but I know this might upset some peoples plans- I hope that the reason the changes are being made will work to benefit everyone in the long run, blessings and happy ROMing -m

Hey Kath,
How about if you and I volunteer to watch the kids at the NY picnic while the moms and dads have their question and answer session? It would give us older obpi's the chance to bond with the kids. We can all compare arms.
Nancy