Would it be too much to ask?

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Sonia
Posts: 45
Joined: Tue Nov 06, 2001 11:59 am

Re: Would it be too much to ask?

Post 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.
debs.eoghans.mum
Posts: 16
Joined: Wed Jun 30, 2004 11:13 am

Re: Would it be too much to ask?

Post 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...
jennyb
Posts: 1183
Joined: Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

Re: Would it be too much to ask?

Post 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)
Karen McClune
Posts: 746
Joined: Wed Sep 10, 2003 4:58 pm

Re: Would it be too much to ask?

Post 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.
Karen Hillyer
Posts: 562
Joined: Fri Sep 06, 2002 1:36 pm

Re: Would it be too much to ask?

Post 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
claudia
Posts: 1241
Joined: Tue Nov 06, 2001 12:21 pm

Re: Would it be too much to ask?

Post 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
tylergsmom
Posts: 282
Joined: Thu Jan 29, 2004 6:56 pm
Injury Description, Date, extent, surgical intervention etc: Hi! I am Laura, the mom of Tyler, who has a ROBPI. I've been a member of this site since 1998 and owe a great deal to the wonderful people in the UBPN community who have helped us along the way get what we needed to get done for Tyler. Tyler is now 14 years old and in the 9th grade. He's a super bright kid and loves his video games. Tyler had the mod quad surgery with Dr. Shenaq shortly before he passed. That was his first and only surgery. Now that he is older he is requesting additional surgery. He'd like to be able to supinate. Our goal is for Summer 2013.
Location: Gulf Breeze, FL

Re: Would it be too much to ask?

Post 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!
Laura LeNoir, Mom of Tyler, Age 14, ROBPI
cinanina
Posts: 47
Joined: Mon May 03, 2004 4:40 pm

Re: Would it be too much to ask?

Post 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.
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Would it be too much to ask?

Post 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.
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