Looking for others...

[BarbH]

Hello,
My name is Barbara and I have a 6 month old daughter who was born with BPI. She was 10lbs 3oz 22in.
I am so happy to find a place to talk people about this. This has been a huge rollercoster ride in these six short months.
My OB lied to me about a lot of things regarding this injury. She told me it was a very rare thing to have and that there was no way to know it would happen. She also said she would recover completly from this in a few weeks to a few months.
It wasn't until my mother came online and looked this up that I found out otherwise. I feel so stupid...I keep going over things in my mind that I may have been able to do differently. I should have known something was wrong as I gained 80 pounds with her. Everyone said that was unusal, but i blindly went with what my OB said.
Now I myself am having to go back for surgery in Sept. I feel so stupid.
I am so glad I wandered onto this board. I am looking forward to getting to know everyone.

[painful]

Hey Barbara,

My name is Eletha, I am 42 and was just diagnosed with BP last month. My mother took me to the hospital and the Dr. when I was a baby and they told her that I was just lazy. She took it upon herself to work my right arm, I can use it some but am very limited to what I can and can't do. I have just been evaluated by Dr. Shenaq and am planning on having surgery soon. I am also glad that you found this website, don't give up on your child, there are alot of Dr.'s out there who are familiar with this problem and can help her. Just make sure to ask questions and this website has also helped me alot. Hope this helps.

[admin]

Barbara, I am glad you found this site some people find it when is too late. Time matters when it comes to BPI.

[whitneys mom]

Hi Barbara. My name is Amanda, and our storys are almost the same. My daughter is 9mths, she was 9lbs 4oz. I know exactly what rollercoaster you are on. I am so happy that you found this site, it has helped me tremendouly(sp?) Some of the wonderful mothers on this site helped me to find help. My daughter will be having sugery on the 17th of Sept. I want you to remember one thing. This is NOT your fault. We have all trusted our OB's, with our lives and the lives of our child. Unfortunatly, they arent always right. Keep your head up ( I know its very hard, i still cry all the time)Your little one needs you to be strong. I wish you all the best, and feel free to email me anytime, even if its just to vent, I find that helps.
Good luck to you and your daughter
-Amanda

[Kristie]

Hello Barbara,
I am Kristie, mom to Karis 6 yrs old and Ian 2 1/2. Ian is my child that has a BPI. His left side is affected. I am sorry you had to find us but glad that you did! I have learned a lot from this site, the people here and from other BPI sites as well.

I know your struggle and worries (we all do!). Feel free to e-mail me. Maybe we can talk on the phone sometime. Where do you live, some areas have support groups neary by. Also know that you will get more responsed after Labor Day as a lot of the people who come here are actually at a camp for BPI this weekend. Meeting others is such an important thing... we all need the support... to give it and receive it!
Blessings,
Kristie

[Kristie]

opps forgot to add my e-mail addy:
kristie@jesusway.org

[admin]

Hi Barbara,
I am sorry to hear about your duaghter's injury. My daughter also has Erb's Palsy. Her left arm is injured and she will be needing surgery in January to help correct her problems. She was surgery free up until now and she is almost 2 yo.
I know how you are feeling, I know the things that you are thinking and wondering about. We all feel the same way and it helps so much to have eachother to talk to.
If you would like to hear more about Ella's story please email. I love to hear from other moms once in a while. It helps take the pain away!
Hope you are doing well for now.
My email: Ldybug4134@aol.com
Krista

[Savannahsmom]

Barbara,
Hi! Boy do we ever have similar stories. I too gained 80 pounds while pregnant. My daughter who is now 2, weighed 11 lbs. 3 oz. and has ROBPI. My dr. too lied to us and said give it a few months and it will come back. I am so glad that I had a excellent pediatritan who told me the truth, and refered us to a BPI treatment center in St. Louis. This is where we had primary surgery. This was at 1 year old. Now at 2 years old, we are scheduled for Mod Quad surgery in Houston, TX. The most important thing is to get your child evaluated by a BPI specialist as soon as possible. Therapy is cruitial and something we do everyday. The anger part..well thats another question. I am still not over the anger of this. It could of been prevented. I have a 4 month old and had him c-section. Went beautifully, So there is still hope if you ever decide to have more children. My e-mail address is Crafton4@hotmail.com If you have anymore questions. This is a great place for info and support and welcome to the boards. heather in KY

[BarbH]

Hi agian,
It makes me sick to think about these babies having to go through this surgery. My daughter Jessica isn't the one having surgery...Yet. It's me. And I am not looking forward to it.
The only person we've seen is a Ped. Nero. and he said he wasn't going to order any tests since she has recovered some movement in her Left arm and he didn't want to put her through the tests because they are painful.

Now that I have everyone on this board to stear me the right way, we'll have an even better chance!!
Thank You!

[admin]

Hello. I am every happy yet sad to see that there are others who are experiencing the same things as we are. My story like so many others is one that I feel could have been preventable. My son now one month old was 7lbs14ozs which is not as big as some others but big for my frame. I gain close to 90lbs myself while pregnant with him. I belief that my child should have been c-section due to the fact that I was in labor for three days with my water broken. You would think that somebody (my doctor) would have done something. Never the less my child was born with this injury and was flown to a hospital three hours away when he was just 2hours old. I am so angry that this has happen to him. I did every thing that I was suppose to so that my child would be healthy, and because of this we are left with months and years of therapy. The Ped.Neuro that we have been chosen says that his nerves have been stretched but not torn so he says this is a good thing, but how do we trust him when the man(my OB) we trusted is the reason for his injury. for the last month we have been doing therapy on his arm and it semms to be getting better everyday but I am so afraid that one day it will just stop healing and not recover 100%. I pray everynight that God will heal my child. I just want to know how to stay strong threw this?