Just found this site!

[Ashley's mom]

Just found this site and have spent several hours reading and learning. I have a 19 year old daughter with a LOBPI. When she was born (pre-internet) we could not find information on BPI. A (PT) cousin insisted she start PT, which she did at 6 weeks old. By 8-9 months, she had almost full use of her arm, though she cannot supinate and has a slight contracture at the elbow. After reading here today, I am truly grateful for her ROM. I did not know the extent of injury possible.

What I do know is the emotional roller coaster I rode for years. The grief and sadness still pop up occasionally (and guilt for these feelings?). I have yet to meet another person with this injury, and I have never talked with another parent who understood. My other daughter (now 17) was born by c-section, uninjured. I can still recall the anxiety I felt at her birth.

Like many of the injured I have read about, Ashley does not feel her injury has held her back. She has found a way to do anything she wanted (including marching band at FSU). I also found Dr. Nath's site and feel she may be a candidate for the mod-quad surgery. Anyone have this surgery as an adult? I would do anything to help her, though surgery would be her choice at this age.

After almost 20 years, I have finally found out what happened to my daughter. This has truly been an overwhelming and emotional day. Maybe my daughter is right when she says the injury had a more profound effect on me than it did her.

Please excuse the rambling, but the chance to talk with someone in the same shoes is overwhelming. Thank you for any response.

[brandonsmom]

Ashleys Mom,
I am glad that you found this site. I guess it is always important to find out what happened and why. Dr. Nath has done surgery on some of the adults here....they have an adult board on here too and that is where you would get a better response. Glad you found us and if you have any other questions, feel free to ask away ! Gayle mom of Brandon ROBPI 7 1/2

[Tanya in NY]

Welcome to the site! I'm glad you found us. I'm glad you are finally able to vent all those pent up emotions. It must be an interesting day of emotions for you.

Tanya in NY
Amber's Mom, ROBPI, 3 years old

[Kath]

Paula
Welcome to the message boards. I am sure by now your head is spinning and your on a bit of an emotional roller coaster.

I found this website 6 years ago and I am ROBPI. I thought, like most adult obpi, I was the only one in the world with this rare injury. It was also and emotional time for me. I think I was really most upset by the fact that this injury is still happening.
If you want to know about adults who have had surgery post a question on the Adult/OBPI Message board and you will find that a few have had surgery.

I am glad for both of you that you found us. I never thought I needed support but when I met several adult/obpi we formed a great bond because we understand each others needs and quirks.

Kath (adult/robpi)

[jep98056]

Paula:

I'll extend my welcome also. I found UBPN while searching the web for information about brachial plexus injuries. For years I hadn't thought very much about my injury and was surprised to find that there are more than just a few of us out there. I met the first person with an injury (Kath) at the UBPN Camp in 2003.

John P. (ROBPI)

[Ashley's mom]

Thank you to everyone who responded, I appreciate your input and will be back.

[admin]

Welcome. I found out about my daughters injury 8 years ago through the internet. No Dr./nurse at the hospital told us about it! Our Family Dr. had no idea - but he has learned about it and supports us 110%. We are very lucky to have gotten so much information at her young age. But, surgery is an option at any age. My family and I went to a seminar in Boston and we met Nancy Birk, the President of UPBN - she spoke with us as a group - and she just had a mod quad through Dr. Nath. Her story is amazing and made me think that Erin could do anything that she set her mind to.

[Ashley's mom]

To Gayle, Tanya, Kath, John and Diana: Thank you so much for responding to my post. I have learned so much in the last fews days, it is quite overwhelming. I posted on the other board and received good advice there also. I've never had much use for this computer, but now my husband jokes I'm an addict!

What and where is the UBPN camp (or conference)? Is it an annual event, or do they have meetings? I'd love to have more information about it. I live near Jacksonville, Florida.

I'm sure I'm not the only mother who has been overprotective of her child. Ashley went away to FSU for a year, then came home to attend college. Of course, I'm (secretly) thrilled she's home, but I also realize how much I enable her and (yikes) like her near me. My younger daughter is much more independent, so I'm sure it's my fault. She's planning on leaving home again to attend college in another city, so I am supporting her independence this time. She currently attends college full time, works part time, and last summer bought herself a new car. It is great to see her confidence grow. I wonder if I'll ever get over wanting to protect her from the world?

Thank you so much for your help. Paula

[hope16_05]

Paula,
The UBPN Camp is a confrence/camp all in one. The next one will be in 2007 some where in Washington state the last one was this past fall in DC. It was really a great experience to meet many members of the boards. We also had the chance to hear from a few doctors and have a great time.

The overprotective thing, I dont think it goes away. My parents a very protective of me but they do not usually hold me back. Just support your Ashley and you will stay close with her. It sounds like we have very similar relatoinship, I am very close to my mom like it sounds Ashley is with you. Its not a bad thing.

Ashley sound like she is doing great. What is she going to college for? I am going to become an Ocupational Therapist.
Good luck to her in what ever she does!

Amy 19 ROBPI from MN

[brandonsmom]

Paula,
No, you never stop wanting to protect them from the world. I am going through that right now with my 18 year old Non-BPI and I cannot imagine what it will be like when my son who is 7 gets older. As a parent I think it is natural to want to protect them....the BPI only makes it worse !!! Gayle mom of Brandon 7 ROBPI PS WELCOME