New here w/ some questions
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BrookesMom
- Posts: 41
- Joined: Sat Nov 01, 2003 8:43 pm
Re: New here w/ some questions
Hi. I live in Las Vegas but I chose to have my daughter's surgery in NY. As everyone before me has said, each child heals differently. I began seeking KNOWLEDGEABLE specialists immediately, even though I did not know if Brooke needed surgery. There are many excellent pediatric brachial plexus surgeons and facilities across this country. Including in NY. I know that Dr. Price and Dr. Rick Abott are in NY (we used Dr. Abott). Also, check with your insurance ASAP to see if there are any pediatric brachial plexus specialists that they cover.
*****Please get information from doctors that specialize in Pediatric Brachial Plexus.*****
*****Please get information from doctors that specialize in Pediatric Brachial Plexus.*****
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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: New here w/ some questions
WOW! I never realized that there were so many New Yorkers on the Message Boards.
Brooksmom... I used Dr.Abbott he did the first mri I ever had of my arm. The hospital he was with is no longer there but he is in Westchester now.
I don't know of any NY groups.
It would be nice if someone formed one in a central location.
Kath/adult/robpi/NY
Brooksmom... I used Dr.Abbott he did the first mri I ever had of my arm. The hospital he was with is no longer there but he is in Westchester now.
I don't know of any NY groups.
It would be nice if someone formed one in a central location.
Kath/adult/robpi/NY
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
Re: New here w/ some questions
Kath, I'm all for a NY Group...let's mobilize the troops!!
Re: New here w/ some questions
Kath...you don't know of any NY groups??? How do you think I got to ubpn??
I ran the New York group when we were still the NY/NJ/CT group. The CT people gathered themselves up and made a group, there is a Northern NJ group and a group in Philly-the SoNJ people go there.
There used to be a really active group upstate, but I think people just got too busy.
And as for me...hmmm, I wonder what I'm up to these days? I've been asked to do more events, but it just hasn't worked out.
New Yorkers are free to email me, perhaps we can get something together.
claudia
claudia@ubpn.org
I ran the New York group when we were still the NY/NJ/CT group. The CT people gathered themselves up and made a group, there is a Northern NJ group and a group in Philly-the SoNJ people go there.
There used to be a really active group upstate, but I think people just got too busy.
And as for me...hmmm, I wonder what I'm up to these days? I've been asked to do more events, but it just hasn't worked out.
New Yorkers are free to email me, perhaps we can get something together.
claudia
claudia@ubpn.org
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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: New here w/ some questions
Claudia,
I've emailed you about a NY Group. Sounds good to me! Anyone else in NY interested?
Tanya in NY
Amber's Mom, ROBPI, 4 years old
I've emailed you about a NY Group. Sounds good to me! Anyone else in NY interested?
Tanya in NY
Amber's Mom, ROBPI, 4 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
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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: New here w/ some questions
Well Claudia... I just found UBPN on the internet.
I called a group in NY/NJ and I was more or less told it was for parents...
Remember, when I found UBPN I think there were only 4 adult/obpi posting on line...
There is a small group in NJ and I attended two of their annual picnics but they were not local for me.
It is a very nice group.
I tried to organize a group here in Rockland but I was already on the BOD of UBPN.
No one wanted to step up and help form the group.
I guess their kids were young and it was to overwhelming for them.
I still think we need a local support group.
I thought Long Island had a group when I first met you.
I think a support group would be good for parents and children.
One that meets once a month and not just with the doctors.
You know how great it is for the kids to see each other and compare arms...
Even the adult/obpi love to compare function and arms... LOL...
Kath adult/robpi
I called a group in NY/NJ and I was more or less told it was for parents...
Remember, when I found UBPN I think there were only 4 adult/obpi posting on line...
There is a small group in NJ and I attended two of their annual picnics but they were not local for me.
It is a very nice group.
I tried to organize a group here in Rockland but I was already on the BOD of UBPN.
No one wanted to step up and help form the group.
I guess their kids were young and it was to overwhelming for them.
I still think we need a local support group.
I thought Long Island had a group when I first met you.
I think a support group would be good for parents and children.
One that meets once a month and not just with the doctors.
You know how great it is for the kids to see each other and compare arms...
Even the adult/obpi love to compare function and arms... LOL...
Kath adult/robpi
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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Philly1103
- Posts: 4
- Joined: Mon Jan 08, 2007 11:06 pm
Re: New here w/ some questions
I'm new on this site myself, my daughter was born 11/3/06 with BPI in her left arm. For the first day and a half she had no movement, but the evening of the second day, should had minimal movement in her hand. She has been going to therapy twice a week now for the past 7 weeks, we were referred to a neurologist at CHOP (Children Hospital of Philadelphia)by my pediatrician, and I took it upon myself to contact Shriners here in Philadelphia. We met Dr Scott Kozin and his team this past Friday, they were great. Friendly, nice, and extremely informative. I haven't met or spoke with anyone that has BPI or a relative with BPI, so I felt so lost, Dr Kozin really put me at ease.
Re: New here w/ some questions
Welcome Philly, as i mentioned to Ideverna, you are way ahead of most by finding UBPN when you did. Although I have never met Dr. Kozin many people here say the same things about him as you did. It is troubling however, that there are more than a few new people on the boards in the last few months. What troubles (and saddens) me is that BPI's are continuing to happen at high rates. These kids deserve better, much better. The medical community wants to keep the status quo and pretend that they don't exist to protect their dirty little secret. Sorry if I stepped on the soap box..again, welcome!
