Questions for my niece
Questions for my niece
My niece was born on 2/8/08 and has been diagnosed with erb palsy. We as a family are struggling to understand everything that is going on and what we should be doing to make sure that she is able to recover from the trauma she has suffered. The delivery was long and painful for baby, mother, and father. So now that we have a clear diagnosis and idea of what we are dealing with we are looking for any suggestions/tips/advice that anyone may have.
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candjwarner
- Posts: 16
- Joined: Sat Dec 29, 2007 1:54 pm
Re: Questions for my niece
Well, welcome to the "club". I guess the best advice I could give you is to keep researching. Also, seeing a BPI specialist. Our specialist saw us for the first time when my son was 2 months old. We also started Occupational Therapy at about one month. The hardest thing is to not have too many expectations. I heard 3 months and nearly freaked when Titus didn't have any movement yet at that age. He gained movement at 4 and a half months. Now it looks like he may recover enough to avoid primary surgery. But, we still don't know. He has an appointment today with BPI specialist, and we are hoping for more answers. We're doing botox with him and that is helping so much! You will learn a whole new language that you didn't know existed (I could have gone my whole life never caring what supination is or how it related to my daily life 
). Anyway, I got off on a tangent! There are different degrees of injury. Outcome really depends on the kind of injury that's involved. Enjoy the blessing of the little one, even in traumatic times they are still blessings! Congratulations on being an aunt to an adorable little girl.
Jamie (mother of Titus 6 months old LOBPI)
). Anyway, I got off on a tangent! There are different degrees of injury. Outcome really depends on the kind of injury that's involved. Enjoy the blessing of the little one, even in traumatic times they are still blessings! Congratulations on being an aunt to an adorable little girl.Jamie (mother of Titus 6 months old LOBPI)
Re: Questions for my niece
Thanks for the encouragement. I have looked around the message boards here and there is a lot of experience and information that I have found elsewhere. Do you have any other ideas for other sites or organizations that we might turn to?
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candjwarner
- Posts: 16
- Joined: Sat Dec 29, 2007 1:54 pm
Re: Questions for my niece
Yeah, I would check out www.brachialplexuspalsyfoundation.org and there are some others as well. The message boards here helped me a lot, too. I am always finding new information here.
Jamie (mother of Titus 6 months LOBPI)
Jamie (mother of Titus 6 months LOBPI)
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PRISCILLA
- Posts: 100
- Joined: Sun Feb 15, 2004 5:43 pm
- Injury Description, Date, extent, surgical intervention etc: Son, traumatic injured (TBPI) - November 2003. 3 surgeries to date.
- Location: North Carolina
Re: Questions for my niece
Congratulations on your niece !
hope to hear from you soon, keep us posted.
hope to hear from you soon, keep us posted.
Re: Questions for my niece
Congratulations on the new little one!! Here is another link for an informative site. http://www.injurednewborn.com/
Our site here also has wonderful information and a wealth of experience from people who have already followed the path you are just beginning. Don't hesitate to ask questions. There are also links at the top of the page for BPI specialists, which are very important when treating these injuries, resources and information. But nothing beats the knowledge, understanding and experience of those that have been there and done that.
Sue
Our site here also has wonderful information and a wealth of experience from people who have already followed the path you are just beginning. Don't hesitate to ask questions. There are also links at the top of the page for BPI specialists, which are very important when treating these injuries, resources and information. But nothing beats the knowledge, understanding and experience of those that have been there and done that.
Sue
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: Questions for my niece
WELCOME AuntLaura!
There are no dumb questions on any of the Message Boards--you are welcome on all of the Forums.
Another very good website is: www.twolittlemonkeys.org
I love it.
Carolyn J
adult LOBPI/age 69 & counting....
Message was edited by: Carolyn J
Message was edited by: Carolyn J
There are no dumb questions on any of the Message Boards--you are welcome on all of the Forums.
Another very good website is: www.twolittlemonkeys.org
I love it.
Carolyn J
adult LOBPI/age 69 & counting....
Message was edited by: Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: Questions for my niece
Laura -
I admire your proactiveness (is that a word?)...getting as much information as early as you can will be extremely beneficial for everyone involved.
Try not to get overwhelmed or frightened by the things you read on the internet...and please keep asking questions.
I would be happy to talk to you via phone if you'd like.
And last but certainly not least, congratulations on the new addition to the family!
Andrea
I admire your proactiveness (is that a word?)...getting as much information as early as you can will be extremely beneficial for everyone involved.
Try not to get overwhelmed or frightened by the things you read on the internet...and please keep asking questions.
I would be happy to talk to you via phone if you'd like.
And last but certainly not least, congratulations on the new addition to the family!
Andrea
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cassidysmom
- Posts: 167
- Joined: Mon Feb 05, 2007 8:56 pm
Re: Questions for my niece
Hi Aunt Laura,
this place has been a great place of support,learning and love since I found it a year ago. My daughter was born in April of 06 with a right obstetrical brachial plexus injury, she has since had the primary surgery (nerve graphs) and is one year post op and doing great!
so many people here would be willing to answer any questions you have....I'm so sorry that his has happened to your niece. take care and feel free to email me anytime and I'd be happy to share our experiences with you.
Dawn, mom to Cassidy 22 months ROBPI
this place has been a great place of support,learning and love since I found it a year ago. My daughter was born in April of 06 with a right obstetrical brachial plexus injury, she has since had the primary surgery (nerve graphs) and is one year post op and doing great!
so many people here would be willing to answer any questions you have....I'm so sorry that his has happened to your niece. take care and feel free to email me anytime and I'd be happy to share our experiences with you.
Dawn, mom to Cassidy 22 months ROBPI
Re: Questions for my niece
Aunt Laura,
My name is Valarie and I have a injury of Brachial Plexus Erbs Palsy like your niece. I have had this injury since birth. I completly understand what your family is going through, my mom went through the same things with me and I have found "unique" ways to over come the "challenges" that people with BPI go through daily. If you want me to send you some, feel free to email me at vchampionsablatura@islander.tamucc.edu or if your have any questions.
My name is Valarie and I have a injury of Brachial Plexus Erbs Palsy like your niece. I have had this injury since birth. I completly understand what your family is going through, my mom went through the same things with me and I have found "unique" ways to over come the "challenges" that people with BPI go through daily. If you want me to send you some, feel free to email me at vchampionsablatura@islander.tamucc.edu or if your have any questions.