United Brachial Plexus Network

Hello,
I have a 2 year old daughter with BPI. She just recently got a tendon transfer and shoulder release surgery by Dr. Kozin. Anyone near the Rochester area with kids with BPI???

There's a great PT (therapist) in Rochester, NY -- her name is Pia Stampe. I just googled her Pia Stampe, PT, NY and got all of her info online.... I know that she has a large bpi following. Call her office and see if they have a support group or a playgroup for moms and kids (and if they don't...suggest it - hehehe), or give her your info and ask that she email you contact information to other families.

Best of luck with recovery for your sweetypie.
-francine

I am in Albany, NY. My Daughter Lindsey was born 12-15-2009 with a ROBPI. She is also a patient of Dr. Kozin. We will be heading to Philly for her 1 year follow up on Wed 12-29-2010. She has no surgeries to date.

We lived out in the Rochester Area about 6 years ago in Canandaigua.

Marlene

I actually go through Monroe County Early Intervention for physical therapy and it is through Pia Stampe. She is very good. I will have to ask her about that
And Dr. Kozin is great. Did he mention anything about surgery yet?

Lindsey was schedule for (6 month) nerve surgery in June, but 3 weeks before she had enough bi-cept movement that he felt it was not necessary. Currently he does not feel any of the surgeries typically done at 12 months are necessary. We are so excited as she recently learned to crawl. Last week at her PT appointment we had an orthotist come to measure her for a splint, but during the session she seemed to correct her self every time that they decided it was not necessary. Lindsey likes to wait till the last minute for everything.

Happy Holidays---Please let me know if you are ever in the Capital District.

Marlene