Cole and I returned from Philly on Friday. Cole had another round of botox to his internal rotators, with no casting this time. (Last year with cast).
I was not certain what to expect after the botox shots...but what we are seeing now is absolutely unbelievable. Before this second round, Cole was definitely functional and still making gains. I always celebrate what he has, but could always see where some movements were not easy or possible.
NOW, I look so hard with my Mamma eyes and I am AMAZED at what I see! He scratches the back of his neck with ease, he has passed the"cookie test", he has completely supinated to look at his "dirty" hand, and when he asks, "where'd gramma go?", his right arm looks just like lefty. Needless to say, I am in awe!
Of course I still am uncertain of what will come or go, but you know that celebrating is sooooooo important!
We begin therapy again 2x a week. I will keep you informed.
I just wanted to share my joy!
Love, Nicole
Mom of 2 year 3month old Cole
Amazing Udate
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- 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: Amazing Udate
YOOOOOWHOOOOOOOOOOOOOOOOOOO, Cole!!!
Congratulations Mamma for Celebrating successes.You are in for MANY of 'em, I guarantee!!!
Carolyn J [aka.."gramma Carolyn J"]
LOBPI/71
Congratulations Mamma for Celebrating successes.You are in for MANY of 'em, I guarantee!!!
Carolyn J [aka.."gramma Carolyn J"]
LOBPI/71
Carolyn J
Adult LOBPI
Adult LOBPI
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- 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: Amazing Udate
I just can't believe what I am reading... I think this is amazing!!! Yeah for you and yeah for Cole!!!!
I hope he keeps everything you see.
I have thought about having my deltoids botox and wondered if I would have any movements. My deltoids totally controls my arm movement along with my upper traps and wondered if it would be worth it at my age... But I would truly love to supinate like other people.
Yeah and thanks for sharing ... I love reading news like this.
Kath robpi/adult
I hope he keeps everything you see.
I have thought about having my deltoids botox and wondered if I would have any movements. My deltoids totally controls my arm movement along with my upper traps and wondered if it would be worth it at my age... But I would truly love to supinate like other people.
Yeah and thanks for sharing ... I love reading news like this.
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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- Posts: 95
- Joined: Sat Dec 15, 2007 2:48 pm
Re: Amazing Udate
Hi Kath,
We decided to botox again, because we had seen what we thought were glimpses of ER. I did fear, what if not...what movements would he have left/lose?
So far, so good. I was just reasured and reasured again (minutes before the procedure), that this wouldn't "hurt" his function, but it could improve it...so after discussions, we decided to do it. Best wishes to you!
Nicole
We decided to botox again, because we had seen what we thought were glimpses of ER. I did fear, what if not...what movements would he have left/lose?
So far, so good. I was just reasured and reasured again (minutes before the procedure), that this wouldn't "hurt" his function, but it could improve it...so after discussions, we decided to do it. Best wishes to you!
Nicole
Re: Amazing Udate
CONGRATS!...
WOW!
AMAZING!
I am GRATEFUL for you and your son's joy on this day!
An inspiration for us all...Continue to be Amazed! As it is real! ..Continue your strong, loving and supportive attitude...everyone wins on this path through life, especially your son
WOW!
AMAZING!
I am GRATEFUL for you and your son's joy on this day!
An inspiration for us all...Continue to be Amazed! As it is real! ..Continue your strong, loving and supportive attitude...everyone wins on this path through life, especially your son
Re: Amazing Udate
Yay Cole!!! That's amazing Nicole!! I'm so happy that things are going well for Cole!! Can't wait to see you guys again! Give me a call sometime!!!
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- 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: Amazing Udate
YES yes, YAYYYYY for Cole!! ...& his Mommy too.
Hugs all around your house,
Gramma Carolyn J
LOBPI/71
Hugs all around your house,
Gramma Carolyn J
LOBPI/71
Carolyn J
Adult LOBPI
Adult LOBPI
- 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: Amazing Udate
Yeah for Cole!
Tanya in NY
Amber's Mom, ROBPI, 6 years old
Tanya in NY
Amber's Mom, ROBPI, 6 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old