United Brachial Plexus Network, Inc.

Tanya or someone who attended, please share some of what you recieved from being there. I sure would appreciate hearing a little about it. Thank you in advance.

Tanya, you are an Angel to admit you "cheated" and got your new OUTREACH at the Conference! YOU GO GIRL!!

HUGS all around, :^)
Carolyn J


Message was edited by: Carolyn J


Message was edited by: Carolyn J

I am sure Tanya will respond too. But I was there as well. Nancy came and spoke, but due to other committments was not able to attend the morning conference.

I am thrilled at what the group in Cincinnati is trying to do. These kind of conferences, which include parents, are fabulous.

Dr. Gilbert was there and gave two interesting presentations. The two things I really took away from his presentations were these: 1. if a child is a candidate for nerve grafting, do it early. and 2. exercise, exercise, exercise (especially swimming) are absolute musts for our bpi children. He said this a number of times.

We, as parents, we encouraged to ask questions, and all were answered.

When I spoke with Dr. Gilbert privately he told me that he loves talking with the parents. He feels that we ask the best and most probing questions--better than the docs do!!

I truly encourage parents to take advantage of these conferences when they come up. I know that the doctors in Cincinnati hope to do this every other year.

claudia

Claudia,

Thank you for your comments about the conference.

Glad it went so well.

Hugs, Karen

Claudia
I am glad the conference went so well.
Thanks for sharing your information.

One of the greatest gifts and OBPI child can receive is seeing and playing with other OBPI children.
All of my life, without realizing it, I searched every crowd to see if anyone was like me.
Meeting my OBPI friends was a great moment for me.

Parents meeting other parents who share their concerns, fears and need for sound medical advice must be so great!

Kath adult/robpi

Thanks to Nancy, Claudia, and Tonya for traveling all the way down to Cincinnati for the BPI support meeting. Nancy answered every parent's questions about what it is like living with BPI and what she recommends that we do as parents - "Love them for who they are - and don't try to make them perfect." Great advice even for our non-BPI kids! Claudia helped address some of the logistics of a support group.

We are starting with about 16 families in this area. Everyone seemed comfortable with the setting and we have already exchanged our first set of emails. Please send me an email if you haven't heard from me and thought you were signed up.

Kath, I appreciate your comment about searching for other BPI kids. I can only imagine what that is like. I was searching for other BPI parents and caregivers, who know what it is like to face the early days, and then the medical and therapy decisions.

Dr. Gilbert was very open and answered even personal questions that parents had about their particular child. I think it is always good to get several perspectives.

Alison gave a good presentation on therapies available, and there was even a grief counselor who spoke and made herself available to us in the future. This is another area which I think is often overlooked.

I invite anyone in this area who is interested in joining to send me an email. We are hoping to plan our next event in the fall, but will be exchanging emails and addresses prior to that time.

Jane

Jane,

Thank you for highlighting the conference for us that couldn't be there.

Hugs, Karen

Thank You, Claudia and Jane! Your information is very helpful and you all are very lucky to have Cincinnati's Childrens Hospital be there for you. I do hope they will have an Annual Conference, it sounds sooo good.

Thanks again.
HUGS all around, 's
Carolyn J

I'm not close to Cincinnati (Marietta), but that is where my daughter had her surgery. I would like to be put on the support group email list with a chance of attending sometime!!

hughmongolloyd@yahoo.com

Thanks!!

Jane
Thanks for all the information on the conference.

I feel it is very important for parents to get immediate counseling.

I know as an adult I actually mourned my losses and then counted my blessings.
After finding ubpn I realized all the things I lost as an obpi and then counted my blessings.
I feel there are times when the children could use a good counselor.
Life is very frustrating for any obpi child.
OBPI children are challenged beyond the ordinary long before they are mature enough to understand.

I also feel that we may become more creative because of it.

Thanks again Jane for bring out this point.

Kath adult/obpi/67

I say AMEN and ditto to add to everything Kath posted above.

HUGS all around,
Carolyn J