hello
hello
Hello My name is Lauren my three month old daughter was born with erbs palsy in her right arm. She has no biceps and problems with her wrists, she really cant move her arm to much. I have been reading posts for awhile now and I would really like to get to know eveyone. WE see Dr. Price and Dr. Grossman.(Has anyone had experiences with them?) They are talking about surgery in January. I am so scared I would really likr to hear from someone who has been there. The emotions that I am dealing with are nuts, I just dont want to be angry anymore, does anyone else feel like that? I just have endless questions, it feels good to let it out thanks for listening!!!!!!!!
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: hello
Hello Lauren
Congratulations on you new baby girl.
I glad you posted your not alone anymore.
We have a very supportive group of parents, injured people both OBPI and tbpi posting here who will support you.
Welcome to the boards. I am an adult birth injured so I cannot help you with your choice of doctors.
Most of the BPI specialists I have met have been very dedicated to giving the children good quality care.
I attended a Neurological Symposium last year in Italy and doctors from all over the world were there and presenting papers.
My overall impression, after attending this symposium, was that they were truly dedicated to caring for the children and restoring function.
I live in NY and both doctors practice both here and in Fla.
There is a fairly large support group in Fla.
If I can help please feel free to e-mail me.
Kath adult/robpi
Congratulations on you new baby girl.
I glad you posted your not alone anymore.
We have a very supportive group of parents, injured people both OBPI and tbpi posting here who will support you.
Welcome to the boards. I am an adult birth injured so I cannot help you with your choice of doctors.
Most of the BPI specialists I have met have been very dedicated to giving the children good quality care.
I attended a Neurological Symposium last year in Italy and doctors from all over the world were there and presenting papers.
My overall impression, after attending this symposium, was that they were truly dedicated to caring for the children and restoring function.
I live in NY and both doctors practice both here and in Fla.
There is a fairly large support group in Fla.
If I can help please feel free to e-mail me.
Kath adult/robpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: hello
Lauren:
Welcome! My name is Ashley and I have 2 son my younges 2yr old is OBPI. I have not had any experience with either of the DR's. But I am sure someone on this board has. I live in south GA. Everyone here is supportive and caring. Feel free to share anything, nothing is too little to share. All of those feelings are perfectly normal. I still to this day have good days and bad days with my emotions. But they are getting better everyday. Feel free to email me with any questions. I will try to help in any way I can. Thanks for posting.
Ash
Welcome! My name is Ashley and I have 2 son my younges 2yr old is OBPI. I have not had any experience with either of the DR's. But I am sure someone on this board has. I live in south GA. Everyone here is supportive and caring. Feel free to share anything, nothing is too little to share. All of those feelings are perfectly normal. I still to this day have good days and bad days with my emotions. But they are getting better everyday. Feel free to email me with any questions. I will try to help in any way I can. Thanks for posting.
Ash
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BIGJAVSMOM
- Posts: 503
- Joined: Tue Apr 12, 2005 4:11 pm
Re: hello
Lauren, hello and welcome to UBPN. Congratulations on the birth of your daughter and I am so sorry that you had to find this board. My son, JAvier is 1 and a half and was severely injured during his birth. To date he has no function or use of his right arm. He had primary surgery with nerve grafts done on Valentines Day of '05. So far, he has gained slight sensation from his shoulder and down to about mid- forearm. We now see Dr. Kozin at Shriners. His surgery was done at Miami Childrens'. We went to Dr. Sanjiv Bhatia, instead of Grossman. I have heard wonderful things about Dr. Grossman and there are a few families on here that have been to him. Hopefully they will contact you soon. Anyway- keep your head up, enjoy your baby and hope for the best. Good luck with your BPI journey, and know that we are all here for you. Email me anytime. marlyncma@hotmail.com
Marlyn mom to MAnny 5 and Javier 1 1/2 ROBPI
Marlyn mom to MAnny 5 and Javier 1 1/2 ROBPI
Re: hello
Thank you everyone for the support and the replies it really helps, its great to have somewhere where everyone understands!! I was reading through the posts and it seems like a lot of people have more then one surgery. Is that usually what happens or has anyone just needed one? Is anyone going to Pennsylvania to Dr. Nash in Nov.?
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Kath
- Posts: 3242
- Joined: Mon Nov 18, 2002 4:11 pm
- Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
- Location: New York
Re: hello
Lauren
Each injury is so different even if the same nerves are involved. We all heal differently and some people have no surgery.
I am older and have never had any surgery but I have a serious injury. It was too dangerous when I was young so my Mother choose not to have any when it was offered.
Kath adult/obpi
Each injury is so different even if the same nerves are involved. We all heal differently and some people have no surgery.
I am older and have never had any surgery but I have a serious injury. It was too dangerous when I was young so my Mother choose not to have any when it was offered.
Kath adult/obpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: hello
Hi Laur...sorry to hear about your baby. Are you from thh tri-state area? I am in CT and we have a 3yr daughter with LOBPI. We have seen Dr. Abbott, Dr Price, Dr. Grossman, Dr. Nath and are now being followed by Dr. Waters & Dr Taff (she is a neurologist who has experience with BPI but she is not our "specialist"...but i love her b/c she gets that it is not just about the arm!). email me off the boards and I will tell you our experience.
Terri
terrimck@optonline.net
Terri
terrimck@optonline.net