United Brachial Plexus Network, Inc.

Hi everyone!! My name is Erin, my husband Chip & I
have a daughter Kaitlyn who will be 4 this weekend(so
she's a very excited little girl)as you all understand!
Although, the following week she'll be having a tendon transfer&bicep lenghtening. She has a LOBPI
She is a wonderful little spirit & we are so blessed to have her (Again, as you all understand)
This network has truly helped in difficult times,Thanks

Hi, everyone.
It's been a very long while since I've posted. My angel's name is Jessica, born May 4,1999, after a very traumatic 2-week early induced birth, resulting in Erb's in her right arm. We have been very blessed that Jessica has recovered extremely well to this point, but as of late is having an increasing difficult time moving her arm behind her back. We live in Waldorf Maryland & see a specialist in DC, and do the early intervention pool therapy (although she will no longer qualify after 3 due to the improvement).
A new sister, Natasha, joined our family on 12-27-2000 via c-section without any complication thankfully.
The girls love to play together and are the joy of our entire families lives. Please feel free to email me
monika_wilson@yahoo.com

Oops - I think we should have all changed that subject line! Oh Well.

Hi - My Name is Anita Hammer - have have 2 children whom are OBPI - both ROBPI - Hmmmm, suprising Huh (same doctors even)

Darian - is almost 9 yrs old (ohhhh my am I feeling a little old right now). Darian is currently without any surgery - had 5 months of PT from 6 wks-6 mo of age then nothing until about a month ago when we discovered she had a bicep contracture. . . . unfortunately the discovery was due to the fact that she also has Bi-Polar Disorder and requires medication that must be monitored through bloodwork - which is how we discovered the contracture. She has now has casting done twice - once for a week - and once for 24 hrs - after which the cast was converted to a splint that she wears each evening after she gets home from school. With this cast/splint she has already gained almost 10 degrees and we're all very pleased.

Cassidy - my youngest (and last) - is almost 3. She just underwent her 3rd surgery - the Capsulodesis with Bicep Lengthening on Jan. 29th and is still currently in the airplane splint (due to come out March 30th).

She had Primary at TCH w/Dr. Laurent in December of 1999 (10 days before Christmas actually) - and recovered very well - no major pain - some good movement. . .

She had the Mod Quad at TIRR w/Dr. Nath in September of 2000 - and again recovered very well - no major pain - alot of great movement. . .still no supination. . . still couldn't lift past 90'

And then of course the Capsulodesis w/Bicep Lengthening at TCH w/Dr. Nath January 2002. . . . and we're hoping that should be it for awhile. If this doesn't work we may have to go for Osteonomy (I'm hoping not). . .but we'll cross that bridge when we come to it!

Book is over - the end! LOL

Jean,

You must be new - or at least newer. . . I've never heard of you before - living just north of Detroit - I live just west of Detroit - in Westland. . . . . . .

Just wondering if you're close by - what docs you use - what therapists - let's swap stories - email me!

Thanks,
Anita

Hi My name is Nicki. I just found this site about a wk ago. I have a daughter named Hannah 2 yrs LBPI. I also have a son Micah who is 3. And my hubby is Karl we have been happyly married for almost 5 yrs.

First child Kailyn, born June 1997, with LBPI. Surgery by Dr. Waters in Boston for muscle transfers in April 1999. She is doing exremely well since the surgery. Our biggest fights have been for the school therapists to provide her appropriate intervention, which she gets 3 sessions now 2 Ot for 45 min and one PT for 30 min. She also gets one Aqua PT 1x 45 min through insurance. She is enrolled in gymnastics, ballet, indoor soccer, preschool and is enrolling into kindergarten next fall. We also have a second child Julia who turned 2 in October (born via c-section) and our third is expected via c-section in July, another girl by ultrasound, who will be named Sarah.

Parents: Rich and Lisa

My daughter was born in 1994 with a LBPI. Like other parents, we left the hospital having no idea our daughter was injured. The doctor that caused the injury has also caused at least one more injury to another precious little girl.
Colleen had a completely paralyzed arm and hand until eight weeks of age, when she moved her shoulder for the first time. The specialists that evaluated her had no idea there was surgery available, and physical therapy was suggested as the only option.
In the summer of 2000, Colleen injured her non-BPI arm requiring a splint and sling. Now with both arms affected, she was not able to do basic care for herself, including bringing food up to her mouth. Now armed with a computer, I found this network, and through it, I found help for my daughter and also found a large group of people just like us.
To date, Colleen has had mod/quad by Dr. Shenaq and recently had the pronator tendon transfer.
I am forever grateful to the people behind UBPN and all the folks that I have met here in Chicago and on the board.

Hello from near Cincinnati, OH! My name is Kim. My husband Jim and I have a 3.5 yr. old daughter, Cameron, who has a right OBPI. She has had two surgeries (primary (7 mths.) and mod-quad (23 mths.))in Texas.

Cameron visits a neurologist at Cincinnati Children's and attends physical and occupational therapy at Dayton Children's. She is also in swim lessons and a wonderful pre-school. Cameron is good-natured, very shy but with an already visible sense of humor.

We've been lucky that her instinct is to use her right arm first. This has helped a great deal, as I don't seem to have to push her too hard.

I've made it a priority to not obsess about treatments, therapies, surgeries and "the arm." We do the work but it doesn't rule our day to day lives. I think I see the benefits in Cameron's attitude. I'm a "live for the moment" kind of person, so that helps.

However, I am compulsive about educating the public about OBPI prevention and enjoy volunteering with UBPN.

Thanks Paula for this great opportunity to meet many on the board!

Paula what a great idea. My name is Christine and we live in the NY area. I have three sons. Justin 6, Madison 4 and Spencer 2. Justin has a bpi of the C5 and C6. He progressed really well and never had any surgery until recently. He had bicep tendon lengthening, pectoralis release and capsuledisus on 1/23/02 at TCH. He just had his splint removed on Monday after eight weeks and is doing fairly well. He will be getting pt twice a week for the next 16 weeks. We can't wait to see the finished product. Justin has a wonderful disposition and we are very proud of all that he has accomplished. Good luck everyone!

Hi, I am a teacher. I have 3 children a daughter Meghan 10, a son Patrick 8 he has ADHD and SI and a daughter Kaitlyn who just turned 2. Kaitlyn was born with RBPI and did not move her arm for 9 weeks. At nine weeks she bent her arm back by her ear while stretching. Since that day she continues to improve. She can do most movements now. She has some winging and her elbow is up at times. We are watching her shoulder also. We consult by tape and pcinics with TCH and see Dr Waters who we love in Boston. So far both doctors say she is doing great. No surgeries recommended. We will follow her shoulder by yearly MRI. We do therapy 3x a week once in the pool. Kailtyn loves Blues Clues and Dora the Explorer. She talks a blue streak and is funny as can be! Meghan is my soccer star and artist and Patrick is a busy boy who loves Nintendo and legos. Our family loves Disney, York Beach, hanging by the pool and reading. Nice to see all the posts! This is a great idea!!