I have a new blog for my daughter

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

I have a new blog for my daughter

Post by gawilliams »

Hello everyone, I just wanted to let you guy know thatI have started a blog for my daughter. It will follow her in the days/months/and years to come as she fights this injury. I ask everyone to stop by and shar any comments or stories. Thanks in advance for your support.

http://lotsofloveforlauren.blogspot.com/
trp314
Posts: 12
Joined: Thu Dec 02, 2010 6:44 pm
Injury Description, Date, extent, surgical intervention etc: Kelsey was born on August 29 2008 and has a right BPI. We have gone back and forth from NY to see Dr Kozin in PA. He is AMAZING! Kelsey got a tendon transfer and shoulder release surgery on October 26th 2010 and has just recently gotten her cast off. She is now externally rotating and supinating....shes NEVER done that before!!!
Contact:

Re: I have a new blog for my daughter

Post by trp314 »

Your story sounds all too familiar to me. I took my daughter to Shriners and Dr Kozin did a tendon transfer and shoulder release surgery at 2 years old. He is by far the best Dr ever!!!! He will monitor your daughter every 3 to 6 months and determine whether or not he will do surgery when shes close to 2. Good luck with everything and I will follow your blog to see how your beautiful daughter is doing.
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: I have a new blog for my daughter

Post by Carolyn J »

THANK YOU for your Blog "gaWilliams"! I love to follow my Adopted Grands thru their "Journeys. :D

Hugs,
Carolyn J
LOBPI/72 :)
Carolyn J
Adult LOBPI
gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

Re: I have a new blog for my daughter

Post by gawilliams »

Thank you for your comments and support. We really appreciate it. It is very encoraging.
User avatar
F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: I have a new blog for my daughter

Post by F-Litz »

Be very careful with what you write in your blog. If you decide in the future, or your daughter decides in the future to sue your doctor, they will use your blog against you. I read what you have so far and I think that you are sharing too many details about your birth. Tell the full story privately but it is my opinion that all these details online like this may hurt your case.

When Maia was little, I had a huge site that I created - it was called injurednewborn.com. I shared a lot about Maia and her journey from birth and on. I never mentioned who it was, where it was, city or anything. I never even said if it was a doctor or a midwife, male or female - I said "birthing practitioner". But someone else told me early on, not to share specific birth information. And they also told me to grab my birth records ASAP, which I did, incase my birthing practitioner would try to change the records or remove certain aspects of the records. So now, I am passing the same information forward to you. Best of luck with your blog.
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: I have a new blog for my daughter

Post by Carolyn J »

"ga Willams", we all have our own individual opinions and experiences and I hope we all respect each others perspective....not every family is going to sue. My viewpoint is that everything I read isonly a suggestion and sometimes a warning, but we all have to make our own educated & informed decisions on what is best for each child and family.

HUGS all around your house,
"Gramma" Carolyn J :mrgreen:
LOBPI/72
Carolyn J
Adult LOBPI
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: I have a new blog for my daughter

Post by Kath »

You have a beautiful baby girl! I'm sure, that there are times when this path your on is overwhelming. I am robpi and was injured at birth. I had no hand or arm movement and was almost 5 when I began using my right hand. Your positive attitude towards this injury and her ability to conquer all the challenges she will face. Your strength will help her gain the confidence she needs to be a strong woman. I always said my Mother never disabled me, she enabled me to be all that I could be.
I'm a wife, mother of 3 and grandmother of 5. I was always more than an injured arm we should never be defined by our arms. I think that being obpi has made me a strong, creative and persistent person. I do something things just to see if I can, not because I want to...LOL...
Bless you and your family.
Kath
Kath robpi/adult

Kathleen Mallozzi
User avatar
F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: I have a new blog for my daughter

Post by F-Litz »

I guess what I may have written may have been misconstrued as offensive -- but you don't get to hear my voice when we write these posts. This is one reason, gawilliams, that I wanted to talk to you by phone on another issue rather than email you - so that you could hear "how" I was saying something. You see, you don't know who I am and you don't know how I talk. There's a lot missing when you are online.

I am just one mom who has been through 12 years of this and I went through a lot of ups and downs and some very harsh learning experiences -- offering advice to a NEW mom who doesn't yet know the ins and outs. I make no judgement as to whether or not you should sue --- that's your own decision. But one thing you might now know is that YOU may decide not to sue, but your daughter may decide at age 17 1/2 that SHE wants to sue and everything you have written between now and then will be read and judged by the jury. So just keep that in the back of your mind.

Just advice from one mom to another which you can take and just throw away and say poo poo, she's full of crap :)
And I won't get offended if you do that. :)
gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

Re: I have a new blog for my daughter

Post by gawilliams »

Thank you everyone for your support and replies. I have read EACH one and took into consideration what you have said. No offense taken this way. :D Like someone said, im new to this injury and have actually thought about giving out "too much information". Thanks again everyone for your support. Please read my new update on Lauren's further treatment.
gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

Re: I have a new blog for my daughter

Post by gawilliams »

Stop by. I have have just added a new post. Thanks again for your support.
:)
gawilliams wrote:Hello everyone, I just wanted to let you guy know thatI have started a blog for my daughter. It will follow her in the days/months/and years to come as she fights this injury. I ask everyone to stop by and shar any comments or stories. Thanks in advance for your support.

http://lotsofloveforlauren.blogspot.com/
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