COMFORTABLE IN THEIR SKIN
-
Christopher
- Posts: 845
- Joined: Wed Jun 18, 2003 10:09 pm
- Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02
Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed
BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.
Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)
"Do what you can, with what you have, where you are."
~Theodore Roosevelt - Location: Los Angeles, California USA
COMFORTABLE IN THEIR SKIN
http://www.kdhnews.com/news/story.aspx?s=34918
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COMFORTABLE IN THEIR SKIN
Sunday, Aug. 2 2009 06:20 AM
By Rebecca LaFlure
Killeen Daily Herald
Paige Lambert was always self-conscious about her hands. The 16-year-old from Edgewood was born with TARS Syndrome – a rare genetic disorder characterized by an incomplete forearm.
"I used to constantly wear jackets," said Lambert, whose hands point inward due to an absent radius bone. "It was so easy to pull over my hands and wrists."
But Paige has since retired her old jackets and sweaters. She prefers to wear short sleeves instead.
For the past four summers, Lambert has attended Hands Down 2 at Peaceable Kingdom Retreat for Children in Killeen. The five-day camp provides a haven where teenagers with hand differences can overcome obstacles and gain confidence from one another.
"Here, I feel like it's so much easier to be myself," said Lambert, who shot a bow and arrow for the first time at camp. This year she made a bull's-eye.
About 35 teens from around Texas attended this year's session from July 20 to 24. The campers – ages 11 to 17 – had full access to Peaceable Kingdom's 170-acre retreat, complete with a rock wall, zip line, fishing pond, archery range, swimming pool, miniature golf course and movie theater. The facilities accommodate those with a range of hand differences, such as a one-handed bow and arrow, or golf clubs created for those without fingers.
In between the usual summer camp activities, the teens swapped tips about how to play musical instruments, tie their shoelaces, paint their nails or style their hair. But perhaps the biggest benefit of all was the realization that they aren't alone in their challenges.
"We're all the same, and we don't judge each other," said 16-year-old Tine-tine Hayes, who was born without thumbs. "Here, we don't have to worry about what people say."
Created eight years ago, the camp is funded by Peaceable Kingdom and Scottish Rite Hospital for Children. It was modeled after a similar Scottish Rite camp for kids 8 years old and younger.
The two camps were the first in the nation specifically intended for those with hand challenges. Since then, similar camps have sprung up in Florida, California, Missouri and another operating soon in Hawaii. The teens–all Scottish Rite patients–attend HD2 free of charge.
"When you become a teen, body image is real important. You're just starting to care about the way you look," said Amy Lake, camp director. "Kids often come to camp really shy and nervous, but they leave with confidence. It can be really life changing."
Shea Graham, 17, attests to the positive impact HD2 can have on a camper's life. Prior to camp, the outspoken teen from Sachse said her hand difference made her extremely self-conscious and depressed.
Due to brachial plexus palsy, Shea's right arm doesn't grow at the proper rate, and she has no movement or feeling in her right hand.
She used to stick textbooks in front of her arms and hands as she walked down the halls in school. For a while, Shea considered cosmetic surgery to lengthen her right arm after a boyfriend broke up with her because of it.
She ultimately decided against the surgery.
"That's what camp did. It helped me accept who I was," she said. "I love everyone here, and I don't think I could ever judge them by their hands. It made me accept myself by realizing I accepted them."
Since then, Shea said she's made it a point to become active in her school and community. She's senior class president of her high school, a cheerleading mascot, and vice president of a local drug prevention organization. When she's not leading her class or entertaining a crowd on the football field, Shea plays drums for an all-girl punk band.
"Right now we're called The Doorknobs. I know, it's kind of lame," Shea said laughing. "When I play the drums, I duct-tape my hand to the drumstick."
Shea wasn't the only musician who attended hand camp this year. KJ Roelke, a 16-year-old from Farmers Branch with a missing finger and radius bone, sings and plays both guitar and piano. Zach Whetstone, 16, from Fort Worth, also plays guitar despite having four partial digits on his left hand and no thumb. And Chris Horton, a 19-year-old camper turned counselor from North Richland Hills jams out on a bass guitar with only two fingers and a thumb on his right hand.
The campers included many athletes, from baseball players to a ballerina. Most reported that their hand difference motivates them to do even better than their average-handed counterparts.
Derek Ponsetti, 19, first came to hand camp seven years ago after it was recommended to him by Scottish Rite.
"They haven't been able to get rid of me since," Ponsetti said, who now serves as one of the camp counselors. Most teens at HD2 are repeat campers, and many, like Ponsetti, come back as counselors after they graduate high school.
About to enter his sophomore year at San Angelo State University, Ponsetti was born with amniotic band syndrome. He wears a prosthetic on his lower left leg and his right foot, and has three fingers on his right hand.
What some may call a disability hasn't seemed to adversely affect Ponsetti in the least. He's an avid soccer player and coaches gymnastics in San Angelo.
"I've always just been told, if you want to do something just go for it," he said. "You can do anything you want."
His favorite part of camp was to witness people overcome obstacles and leave camp with a renewed confidence in themselves.
"A lot of these campers need help getting out of their shell," he said. "Seeing other people who can still do stuff with their differences amazes everyone, even me. It turns into a big family."
And while many campers' transitions are clear during their five-day stay, the real impact isn't completely apparent until they return home.
Paige said, after her first camp experience, she went back to school a more outgoing and positive person. Instead of hiding her hand difference, she embraced it. She loves to talk about her hands now.
It's the strong support network she gained at HD2 that made all the difference, she said.
"I'm glad I have these hands," Paige said. "If I didn't, I couldn't have met anyone here."
============================================
COMFORTABLE IN THEIR SKIN
Sunday, Aug. 2 2009 06:20 AM
By Rebecca LaFlure
Killeen Daily Herald
Paige Lambert was always self-conscious about her hands. The 16-year-old from Edgewood was born with TARS Syndrome – a rare genetic disorder characterized by an incomplete forearm.
"I used to constantly wear jackets," said Lambert, whose hands point inward due to an absent radius bone. "It was so easy to pull over my hands and wrists."
But Paige has since retired her old jackets and sweaters. She prefers to wear short sleeves instead.
For the past four summers, Lambert has attended Hands Down 2 at Peaceable Kingdom Retreat for Children in Killeen. The five-day camp provides a haven where teenagers with hand differences can overcome obstacles and gain confidence from one another.
"Here, I feel like it's so much easier to be myself," said Lambert, who shot a bow and arrow for the first time at camp. This year she made a bull's-eye.
About 35 teens from around Texas attended this year's session from July 20 to 24. The campers – ages 11 to 17 – had full access to Peaceable Kingdom's 170-acre retreat, complete with a rock wall, zip line, fishing pond, archery range, swimming pool, miniature golf course and movie theater. The facilities accommodate those with a range of hand differences, such as a one-handed bow and arrow, or golf clubs created for those without fingers.
In between the usual summer camp activities, the teens swapped tips about how to play musical instruments, tie their shoelaces, paint their nails or style their hair. But perhaps the biggest benefit of all was the realization that they aren't alone in their challenges.
"We're all the same, and we don't judge each other," said 16-year-old Tine-tine Hayes, who was born without thumbs. "Here, we don't have to worry about what people say."
Created eight years ago, the camp is funded by Peaceable Kingdom and Scottish Rite Hospital for Children. It was modeled after a similar Scottish Rite camp for kids 8 years old and younger.
The two camps were the first in the nation specifically intended for those with hand challenges. Since then, similar camps have sprung up in Florida, California, Missouri and another operating soon in Hawaii. The teens–all Scottish Rite patients–attend HD2 free of charge.
"When you become a teen, body image is real important. You're just starting to care about the way you look," said Amy Lake, camp director. "Kids often come to camp really shy and nervous, but they leave with confidence. It can be really life changing."
Shea Graham, 17, attests to the positive impact HD2 can have on a camper's life. Prior to camp, the outspoken teen from Sachse said her hand difference made her extremely self-conscious and depressed.
Due to brachial plexus palsy, Shea's right arm doesn't grow at the proper rate, and she has no movement or feeling in her right hand.
She used to stick textbooks in front of her arms and hands as she walked down the halls in school. For a while, Shea considered cosmetic surgery to lengthen her right arm after a boyfriend broke up with her because of it.
She ultimately decided against the surgery.
"That's what camp did. It helped me accept who I was," she said. "I love everyone here, and I don't think I could ever judge them by their hands. It made me accept myself by realizing I accepted them."
Since then, Shea said she's made it a point to become active in her school and community. She's senior class president of her high school, a cheerleading mascot, and vice president of a local drug prevention organization. When she's not leading her class or entertaining a crowd on the football field, Shea plays drums for an all-girl punk band.
"Right now we're called The Doorknobs. I know, it's kind of lame," Shea said laughing. "When I play the drums, I duct-tape my hand to the drumstick."
Shea wasn't the only musician who attended hand camp this year. KJ Roelke, a 16-year-old from Farmers Branch with a missing finger and radius bone, sings and plays both guitar and piano. Zach Whetstone, 16, from Fort Worth, also plays guitar despite having four partial digits on his left hand and no thumb. And Chris Horton, a 19-year-old camper turned counselor from North Richland Hills jams out on a bass guitar with only two fingers and a thumb on his right hand.
The campers included many athletes, from baseball players to a ballerina. Most reported that their hand difference motivates them to do even better than their average-handed counterparts.
Derek Ponsetti, 19, first came to hand camp seven years ago after it was recommended to him by Scottish Rite.
"They haven't been able to get rid of me since," Ponsetti said, who now serves as one of the camp counselors. Most teens at HD2 are repeat campers, and many, like Ponsetti, come back as counselors after they graduate high school.
About to enter his sophomore year at San Angelo State University, Ponsetti was born with amniotic band syndrome. He wears a prosthetic on his lower left leg and his right foot, and has three fingers on his right hand.
What some may call a disability hasn't seemed to adversely affect Ponsetti in the least. He's an avid soccer player and coaches gymnastics in San Angelo.
"I've always just been told, if you want to do something just go for it," he said. "You can do anything you want."
His favorite part of camp was to witness people overcome obstacles and leave camp with a renewed confidence in themselves.
"A lot of these campers need help getting out of their shell," he said. "Seeing other people who can still do stuff with their differences amazes everyone, even me. It turns into a big family."
And while many campers' transitions are clear during their five-day stay, the real impact isn't completely apparent until they return home.
Paige said, after her first camp experience, she went back to school a more outgoing and positive person. Instead of hiding her hand difference, she embraced it. She loves to talk about her hands now.
It's the strong support network she gained at HD2 that made all the difference, she said.
"I'm glad I have these hands," Paige said. "If I didn't, I couldn't have met anyone here."
Re: COMFORTABLE IN THEIR SKIN
That's awesome!!! Thanks for sharing that, Christoper! 
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: COMFORTABLE IN THEIR SKIN
Awesome article Chris!!! Thanks for sharing! I hope that is exactly what people get from UBPN camp, I know thats what I got out of our camp.
Thanks again,
Amy 22 years old ROBPI from MN
Thanks again,
Amy 22 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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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: COMFORTABLE IN THEIR SKIN
YES YES, that is what happens at UBPN Camps too ...next Camp2010 information coming soon!
HUGS Chris,
Carolyn J
...next Camp2010 information coming soon!HUGS Chris,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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:
-
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: COMFORTABLE IN THEIR SKIN
Awesome article, thanks for sharing Christopher.
Kath robpi/adult
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: COMFORTABLE IN THEIR SKIN
bumping up. when looking for a topic such as this one, just type in the word skin and it will bring it up. 
hope this is the right one...
hope this is the right one...-
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: COMFORTABLE IN THEIR SKIN
Thanks for finding this,Joyce. Re-reading this is "a good thing"!
Carolyn J
LOBPI/NOW 74...YIKES!!
Carolyn J
LOBPI/NOW 74...YIKES!!
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kim lane
- Posts: 18
- Joined: Wed Jan 16, 2002 1:03 am
- Injury Description, Date, extent, surgical intervention etc: My daughter, Dani has ROBPI. She was born in 1997, and suffered 2 avulsed nerves and stretching to another as a result of her birth injury. Dani has had 2 surgeries, both under 5 yrs of age. Sural nerve graft, and a humeral osteotomy, latissimus and pectoral muscle involvement as well.
Dani is an avid Western equestrian, and owns her own horse, Zoey. - Location: Langley, British Columbia, Canada
Re: COMFORTABLE IN THEIR SKIN
That is FANTASTIC. Thank you for sharing.
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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: COMFORTABLE IN THEIR SKIN
BUMPING UP for a new Family for UBPN.
Carolyn J
LOBPI/74
Carolyn J
LOBPI/74
