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.
Hi Erin,
WE BPI-ers ARE T-o-u-g-h!! We Fight thru EVERYTHING like he--! That's what gets us thru the "Yuk of Life" [I call it that, it helps!] Stella is going to be amazing and keep on surprising you, sooo get used to it!!
TAKE CARE OF YOURSELF,MOM!!!
HUGS for you & Stella with Continuing Prayers,
Carolyn J
Adult LOBPI,68, WA (State)
ps..please keep us posted...
Stella turned 5 months old yesterday, the primary surgery on the 26th was her first time in the OR. We met another family whose daughter just had primary surgery yesterday, it was nice talking to them. Otherwise things are just holding steady, waiting for Stella to finish healing up! I'll keep you all updated, thanks again for all of your support! I mentioned UBPN to Dr.Park's PA and she asked yesterday what the website was so she could give it out to patients asking about support groups. I am so glad these boards exist!
Erin
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.
I hope things are moving along and sweet little Stella is healing.
I have been praying for her daily or just when ever I think of your family.
It must be so tough she is so tiny.
It's amazing how tough us little bpi kids are.
My mother use to say I had a will of iron...
My husband and children will tell you the same thing.
She will soon be up and well and meet all her many milestones.
Looking forward to hearing how well she is doing
I was out of town for the weekend. Now I'm catching up with the boards. I will add you and Stella to my prayers. You have my best wishes for a full recovery for Stella.
After 18 days in the hospital, we are home tonight. Stella had a 3rd surgery to "investigate" and close up her incision yesterday, and after seeing her useual therapist today, we went home. I swear, she is such a strong little girl, I know I wouldn't have tolerated the stuff she went through! I am so proud and amazed by her, she went through so much, so many painful experiences daily. It was so hard, but I stayed positive because she did. She always tried to give me a smile, I don't know how someone so little made it through all this, it makes me the most mad because she never would have had to experience all this pain if it hadn't been for the delivering doctor. Some of our roomates pointed this out. They said that while their babies were genetically (or from God, depending on who you talked to) given their medical problems, Stella's was inflicted on her by the doctor. One mom said she felt so sorry for me to have known that my child was perfect, and then had that taken away. Ugh, it was a long 18 days. I guess we just have to move on to recovering! Anyways, I look forward to catching up on everything here. Thank you all for the encouragment, thoughts and prayers, I am so lucky to be a part of this board!
Erin
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
