Non BPI stuff with my BPI kiddo
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Cara
- Posts: 497
- Joined: Mon Nov 05, 2001 9:34 pm
- Injury Description, Date, extent, surgical intervention etc: My oldest daughter suffered a LOBPI. We were sent home form the hospital without being told anything was wrong. She had nerve graft surgery at one year of age, tendon transfer and release at 3 1/2 yrs of age.
- Location: Indiana
Non BPI stuff with my BPI kiddo
Most of the "old timers" know our story. Rosalynn is my almost 9 yr old with LOBPI. iuse to be a egular on the boards until our youngest was born. Dagny has complex heart defects, trach and is on a ventilator at home. Had to quit my job to stay home and take care of her. Since I am not working we have done some major downsizing so we don't have internetat home and I can't get on the board frequently as I used to. Rosalynn is in the hospital right now. She has malrotation of the intestine like Dagny did. We are waiting for them to determine if she is going to need surgery. For those of youthat pray we could use all of them we can get. It seems so unfair. She has been such a trooper with all she has gone through with her BPI, major life changes with the needs of her sister and this on top of it just seems like toooooo much. We are also going to have to get my middle daughter tested to see if she has malrotation as well. The Lord gives us strength and is not suppose to give us more than we can hadle, but right now I would really like to be a 98 lb weekling and not have to deal with all this. Thanks for leting me vent.
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marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: Non BPI stuff with my BPI kiddo
Cara,
I am so sorry your kids are going through all this and that you have to deal with it. It sounds like a lot for any one family to deal with, don't worry about venting!
I will be thinking about your kiddos!
Marieke 33, LOBPI
I am so sorry your kids are going through all this and that you have to deal with it. It sounds like a lot for any one family to deal with, don't worry about venting!
I will be thinking about your kiddos!
Marieke 33, 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:
Re: Non BPI stuff with my BPI kiddo
You all, Dagny & Rosalynn are in my "Forever Prayer LIst".
Tell Rosaynn I know she is as Brave as Dagny has been because all BPI-ers ARE BRAVE.
Gramma Carolyn J
Cara, And all MOMS, feel free to VENT here anytime!!! We are here for you.
Message was edited by: Carolyn J
Tell Rosaynn I know she is as Brave as Dagny has been because all BPI-ers ARE BRAVE.
Gramma Carolyn J
Cara, And all MOMS, feel free to VENT here anytime!!! We are here for you.
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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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: Non BPI stuff with my BPI kiddo
Please tell Roasalyn she is in my prayers. Dagny has been for a very long time.
Sometimes we can't seem to pray for ourselves. That is when we reach out and ask our friends to pray for us. Try to take care of your self a little.
Praying for you and the girls
Kath robpi/adult 69
Sometimes we can't seem to pray for ourselves. That is when we reach out and ask our friends to pray for us. Try to take care of your self a little.
Praying for you and the girls
Kath robpi/adult 69
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi