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Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 2:58 pm
by Sonia
Hi my name is Sonia Holland. I live in Houston Texas and have two children. My daughter Kendall is age 4 and has a LOBPI. She has had no surgeries to date. During the 1st two years, this message board has been a life saver. I have gleaned so much information. During the last year and a half, I kind of took a break from the boards to stand back with a wait and see attitude. Fortunately, Kendall has progressed wonderfully. The last few months I have been so worried about enrolling her in Pre-School. I was scared about having her injury aggravated. So I got back on the boards, to see what other mothers have posted and have once again gotten alot of information. I told Kendall that I was scared for her to go to school and she informed me to not to be scared because she wasn't! Kendall is such a brave and strong little girl. I am very proud of her! Thank you.
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 3:50 pm
by debs.eoghans.mum
HI i am Debbie mum to Eoghan a gorgeous happy 8 month old with a robpi.Eoghan had primary surgery in june still recovering.I visit this board under the same name.We live in Dublin Ireland but wish it was texas as bpi surgery seems so more advanced there and dr nath seems so nice through reading other posts!!
I was considering bringing Eoghan swimming when his sister Aoibhe(nearlly 6) goes back to school.Do you find it good?
This post is such a good idea as i was always wondering if everyone was from us...definatly obtain outreach as i received back issues recently and they explained more to me regarding EVERY aspect of erbs better than any doctor.I keep re reading them as they are amazing so informative....I didn't discover this site until just before Eoghans op and it kept me sane knowing there are people out there to provide answers encouragement and advice at the click of a mouse...
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 4:39 pm
by jennyb
Hi
I'm Jenny and I live in ?New Zealand altho I'm English. I got my rtbpi 24 yeasrs ago and have no use of my lower arm or hand altho like Xiggers in the post above I can hold a book against my body with the upper arm. Unlike Xiggers I do get significant pain occasionally. I have never thought of myself as disabled for a second and my lack of a right arm has never affected me in my everyday life. I have brought up 3 kids and I now help run a horse riding school. I have never had or sought any treatment or surgery since my original accident.
On the tbpi message vboard there is a long thread titled'"Roll Call-lurkers too" where many people with tbpi have signed their name, 148 so far from 13 different countries (including Portugal!).
Welcome to UBPN and I'm sorry Portugal didn't win the soccer :0)
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 4:45 pm
by Karen McClune
Hi Cinanina,
Welcome to the boards. I have a son (27) who 4 1/2 years ago was in a motorcycle accident. Ryan found the site and we have learned so much from everyone. There isn't a question that either he has had or we have had that someone didn't answer.
We both post under our real names. Ryan lives in Virginia, outside of Washington DC and my husband, David, and I live in the state of Washington on the west coast.
We both have become very active on the UBPN boards.
Again welcome and we hope to see you posting with other questions often.
Hugs, Karen, UBPN Board of Directors.
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 4:51 pm
by Karen Hillyer
Hello Catarina
My name is Karen Hillyer and I live in England, UK.
My son Gavin has a right Erb's Palsy and has had three surgeries on his arm. he is now 12 years (almost 13) old.
He has regained good function from his surgeries, although he probably only has about 60-70% function in his arm.
He finds it hard to put his hand behind his back, he can raise it to about head hight, but any higher and his elbow is bent when he does, he can supinate quite well ( put his hand facing palm upwards) he is a bright happy boy who gets on with most things in life. He is computer and playstation mad like most boys his age!
I am closely involved with the Erb's palsy group here in England andif you want to e mail me your address privately, I would be happy to send you copies of our 3 monthly magazine if you would like to receive it.
This is a very good idea of yours - it's nice to get to know people.
Karen
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 5:11 pm
by claudia
Hi:
My name is Claudia and that is how I post. I have four children, 11, 9, 9, almost 5. My almost 5 year old daughter has a left obpi. She has had 3 surgeries at TCH and will probably have more. She is an incredibly happy and bright little kid.
I am involved with ubpn (I do support groups) and am a stay at home mom.
We live on Long Island, NY (that is near New York City).
Welcome to the boards. I have made some wonderful friends here.
claudia
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 5:16 pm
by tylergsmom
Hi Catarina---My name is Laura (tylergsmom), I am 27, and live in Salt Lake City, Utah. I have a 6 year old son named Tyler who has ROBPI. He had the Mod Quad performed at TCH in June. He has had his splint off for almost 3 weeks now, and we haven't seen much progress at this point, but are still keeping our fingers crossed hoping that all of the therapy will help him.
Welcome!
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 5:24 pm
by cinanina
Thank you all for your answers.
I am realizing you are indeed a lot, I guess it must take some time to get to know just some of you.
I did subscribe Outreach when the baby was born. Then I completely forgot I had subscribed until one day I received it in my mailbox! Even before most of the people from the US! It was great to get it and thank you also for that. I have to say I really admire your work and find all your inciatives wonderful and most helpful. It's a pitty we don't have an association like this here but I guess there wouldn't be all that many people to participate as we are such a small country. I find there are a lot of people in my country with this injury, I see them all the time in the doctors, at PT, I've heard of lots of friends' friends and even found out I had a friend with erbs palsy and that I had no idea - she even had the same surgery done that my son had.
Well, I'd just like to say I admire your work and think it's such an important and helping mission. But I'm sure you all know that and have daily proofs of the importance of what you are doing.
Re: Would it be too much to ask?
Posted: Tue Aug 10, 2004 5:42 pm
by admin
My name is Kim I am mother of Demetria(DeeDee). We live in Northeast PA. DeeDee has had Erbs Palsy since birth, Right arm. We are going to Shriners the 18 of this month(Aug) to find out if she could get more movement from surgery. I found this site a few months ago and it has really helped me. 12yrs ago the Dr. told me there was about a 5% chance of improvement and I just didn`t like the odds so I felt there was no help for her so I just decided not to do any thing till I started coming to this site.