Upstate NY
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marleneross
- Posts: 37
- Joined: Fri Mar 12, 2010 10:21 am
- Injury Description, Date, extent, surgical intervention etc: Lindsey - ROBPI - 12/15/2009
Upstate NY
I am looking to make a conection with someone in Upstate NY who has had a child with a Brachial Plexus injury. My daughter Lindsey was born on 12/15/2009 with Erb's Palsey, we are currently travel between Albany and Shriners in Philladelphia for treatment along with weekly physical therepy. We are also having to deal with Tortocollis.
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F-Litz
- Posts: 970
- Joined: Fri May 26, 2006 6:53 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
- Location: Ambler, PA
Re: Upstate NY
Pia Stampe is a PT up in Rochester. email her at pia@rochester.rr.com
Pia may have a list of folks in that area? Best to ask her..... she works primarily with kids with bpi.
-francine
Pia may have a list of folks in that area? Best to ask her..... she works primarily with kids with bpi.
-francine
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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: Upstate NY
WELCOME MARLENE to our UBPN Family of Caring, Informed,Experienced and Supportive Parents, adults with OBPI, aka Erb's Palsy, as well as persons with TBPI.
There is no such thing as a dumb question and everyone is welcome on any Forum board. We all continue to learn from each other.
Carolyn J/71
There is no such thing as a dumb question and everyone is welcome on any Forum board. We all continue to learn from each other.
Carolyn J/71
Carolyn J
Adult LOBPI
Adult LOBPI
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Jmarcellus
- Posts: 17
- Joined: Mon May 30, 2005 8:13 pm
- Injury Description, Date, extent, surgical intervention etc: Daughter with ROBPI 5/8/2002. forceps delivery. Avulsion: C4, C6, C7, Rupture: C5, stretch C8. Diaphragm paralyzed so had plication done at 7 weeks. Nerve graft done at Tx Childrens (Dr Nath) at 3 months. Mod Quad (Dr Nath) at 18 months. Sensation loss especially along ulnar nerve. Grasp ok, no finger extension, pronation, or wrist flexion. We use biofeedback/estim and TES unit. As well as a benik wrist splint for positioning. Myofascial Release therapy has helped a lot with tightness and blockages (2x/mth).
- Location: Rochester, NY
Re: Upstate NY
I live in rochester NY and Pia worked with my daughter while she was in Early intervention. My daughter is 7 now and I welcome anyone who wants to contact me regarding BPI.
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marleneross
- Posts: 37
- Joined: Fri Mar 12, 2010 10:21 am
- Injury Description, Date, extent, surgical intervention etc: Lindsey - ROBPI - 12/15/2009
Re: Upstate NY
Thank you all for your reasponse. We are currently working with a few groups to find someone in the NY capital District dealling with BPI.
Jmarcellus- Are you registered with NY Parent to Parent? They were trying to find a family for us, they came up with a parent in Rochester with a 7 year old daughter with OBPI who has had one surgery? Is this you by any chance?
Jmarcellus- Are you registered with NY Parent to Parent? They were trying to find a family for us, they came up with a parent in Rochester with a 7 year old daughter with OBPI who has had one surgery? Is this you by any chance?
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Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: Upstate NY
I've sent you a private message.
Tanya in NY
Amber's Mom, ROBPI, 7 years old
Tanya in NY
Amber's Mom, ROBPI, 7 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
Re: Upstate NY
Hey There We live in Ballston Spa..our son who is almost 10 yrs old now has a severe bpi We have been to Texas and back...twice. Now we see Dr Waters in Boston on a regular basis. (He is the greatest doc). We do not see any Dr. locally for his injury. If you would like to talk or need advice please contact me.
Re: Upstate NY
I live in Fleischmanns, New York, my son who is 6 years old, has had two surgeries.
