United Brachial Plexus Network, Inc.

HUgs to you and Amaya,Mom!
I, too,like Kath grew up believing I was the only person like this and never had therapy. I am amazed at what is possible for our BPI children now days.
I love these updates, keep them coming!

"gramma"Carolyn J
LOBPI/72

Thanks Kath and Carolyn! It truly is woderful what they are able to do now to help our children. I wish it was available when you were both children but I am so grateful for the wisdom and exprience that you both bring to this group. Your advice, comments and encouragement means alot to Amaya and I. I will keep you posted on her progess. Take care.

I just want to make something clear.
Unlike Carolyn, I had PT all of my childhood.
My parents took me to several different hospital in NYC before treatment began at New York Hospital. ROM began at 2 weeks old and my entire childhood was spent in informal therapy. I had some sort of formal therapy for approx a year or more... But my home therapy was a constant form of play. One of my older brothers use to help by playing games ( at least that's what I thought it was.)

I took tap, toe, ballet, modern dance and gymnastics (acrobatics) until I was 12. I could do a one handed cartwheel by the time I was 6 and fake it to look like two handed for the teacher... LOL.. I could only support weight on my left unaffected side. I had to take piano lesson, how I hated them, to help get my fingers to move... I had to learn to hang clothing on the line when i was very young and I had to do a certain way so I would use my hand. They used a black ball in my hand when I was very small it was a very hard ball and they increased the size of it over time. Learning to bounce a ball with my right hand was annoying and when I was older and played games with the kids I would do it left handed. But I can do it with both hands. In fact I do many things with either hand depending on the task. Each of my hands had assigned tasks so that I would use both hands as much as possible. If I was not nagged to use my robpi arm/hand I would never use it, so as I gained use my Mom taught me to do things with my right hand as much as I could. All her nagging paid off even in my old age. I knew I was having a problem because I was sitting with my thumb in one day... I heard her voice in my head saying..."Kathleen, thumb out". I began to stretch and exercise my arm, I was getting lazy. PT is forever even at 70...to keep our arms working.

I gained movement and lost movement during growth spurts... but as I aged I gained movement in my hand. I could barely use my right hand at 5 but eventually was forced to write with my right hand. It was a painful process because I use to get cramps in my hand. What I realized in my 60's was that I could not feel the pencil. I held the pencil so tight my knuckles were white. My mom was always trying to get me to loosen up... I still love a large fat pen or if it metal I seem to feel it more. My hand is still weak but I can type with both hands and almost as rapidly as I think. LOL...

You will be amazed at how much your baby will be able to do and how creative bpi babies are. We are so much more than our arms and my arm never defined me.

I wish my Mom had a place like UBPN for support because often families don't fully understand and think it will go away. Some of my relatives thought I was cured years ago... They were amazed when I found UBPN and spoke so openly about my limitations etc. You need other parents to help and guide you through the maze of bpi. You also need adult obpi to let you know we have normal lives and babies and grand babies. We have had full productive lives. Amaya will have something I wish I had. She will have an opportunity to meet other children who have the same injury. I met my first OBPI friend in 1999 and it was such a healing and rewarding experience. I now have bpi friends who can share my challenges and understand my frustrations and I don't have to explain... Looking forward to hear about all her progress.
Kath

Wow Kath! You have an incredible story and you sound like you had an amazing mom! Thank you so much for sharing with me.

Amaya's Mom... All OBPI mom are terrific. I've met so many over the last 11 years and am always amazed at how much they do for their children... They give so much and most obpi children do not realize how much our parents did because they made it seem normal.

NOW .... I JUST LOOKED AT YOUR PROFILE.... I ALSO LIVE IN ROCKLAND COUNTY NY.
It's a small world...LOL...

Kath, it is a very small world... I just looked at your pic and thought to myself that you look familiar but maybe that is because I see your pic with every post.... LOL!

Anyhow, just got back home today. Therapy was a little rough this week but Amaya is in good spirits and I always remind her that she can do anything if she sets her mind to it.

I live in Pearl River and raised all my kids in Rockland and all three still live here... LOL.

Where do you take her for therapy here? I used a therapist in NJ for years until he dropped my insurance. I loved him because he read everything about bpi before he worked on me. He reviewed his papers and was also a chiro.

I lived in New City for about 20 years before I moved to Pearl River.

Kath, I just private messaged you.