You know...there is hope!
Posted: Mon Sep 01, 2008 6:16 pm
I have not been on this board for a few years. I first want to thank UBPN and Francine Litz because without you I would have been lost in my moments if despair.
My baby Brooke was born with RBPI. Her pediatrician barely knew what BPI was and the hospital staff was worse (and scared). After my release from the hospital I ran home, and found this board.
Our insurance company referred us to an adult BPI specialist in California who we rejected after one visit. We would mortgage our house if need be - but we would not have someone do surgery on our baby who was not a pediatric BPI specialist.
We traveled across country from Las Vegas with baby Brooke. We were petrified, our pediatrician told us Brooke may never be able to use her arm, write, play with barbies (ok the last one was my fear).
We interviewed many BPI specialists and wound up having the surgery in NY. Dr. Abbott found scar tissue on the nerve and a minor tear. After Brooke's release from the NICU we were placed in a room on the pediatric floor.
We walked in and there was a little girl, with a turbon on her head, pictures of her family taped to the television; she was dying of cancer.
That moment changed our lives forever. Brooke was orthopedic, neurological, this little girl was terminal. How quickly things were put into perspective.
Brooke has gone through many years of physical therapy. She has a 6 inch scar on her neck, she runs with her arm bent - but she runs real fast. She writes, very nicely with her left hand, although in my opinion she would have been right handed. Brooke knows she has BPI and calls her arm righty. Her teachers know too. The truth is though, no one else pays attention to it or even notices it.
To us it is no big deal - yeah, righty is a little bent and not as strong, but Brooke is healthy and alive and smiling, has lots of friends and is without a doubt a 100% normal 6yo.
Through all of this, we learned to be strong, make wise decisions, be positive and be an advocate. I will always remember the little girl in NY. If it were not for that little girl we would have been victims of Brooke's disability.
My baby Brooke was born with RBPI. Her pediatrician barely knew what BPI was and the hospital staff was worse (and scared). After my release from the hospital I ran home, and found this board.
Our insurance company referred us to an adult BPI specialist in California who we rejected after one visit. We would mortgage our house if need be - but we would not have someone do surgery on our baby who was not a pediatric BPI specialist.
We traveled across country from Las Vegas with baby Brooke. We were petrified, our pediatrician told us Brooke may never be able to use her arm, write, play with barbies (ok the last one was my fear).
We interviewed many BPI specialists and wound up having the surgery in NY. Dr. Abbott found scar tissue on the nerve and a minor tear. After Brooke's release from the NICU we were placed in a room on the pediatric floor.
We walked in and there was a little girl, with a turbon on her head, pictures of her family taped to the television; she was dying of cancer.
That moment changed our lives forever. Brooke was orthopedic, neurological, this little girl was terminal. How quickly things were put into perspective.
Brooke has gone through many years of physical therapy. She has a 6 inch scar on her neck, she runs with her arm bent - but she runs real fast. She writes, very nicely with her left hand, although in my opinion she would have been right handed. Brooke knows she has BPI and calls her arm righty. Her teachers know too. The truth is though, no one else pays attention to it or even notices it.
To us it is no big deal - yeah, righty is a little bent and not as strong, but Brooke is healthy and alive and smiling, has lots of friends and is without a doubt a 100% normal 6yo.
Through all of this, we learned to be strong, make wise decisions, be positive and be an advocate. I will always remember the little girl in NY. If it were not for that little girl we would have been victims of Brooke's disability.