United Brachial Plexus Network, Inc.

I am very excited that Dr. Shenaq, Dr. Laurent, Dr. Lee and possibly Nancy Konte-Fisher and Lisa D. will be coming to Presque Isle, Maine to present Oct. 2, 2004! I will give more details as I get them from the TCH BPI team. I really can not believe they are coming to us finally!!!!! We have gone to Boston 2x to see Dr. Nath, to PA to see Dr. Nath and to TCH 2x to see both Dr. Shenaq and Dr. Nath. It is very exciting for all of us BPI families in Northern Maine. If you are interested in attending please email me and I can give you more details. Stacey

I was very pleased to see your post. Our son had surgery at TCH five years ago and we are all native Mainers.

We knew nothing of Erbs Palsy before he was born and often have to explain to people what it is, including the school nurse at our son's school.

A premature baby with Erbs Palsy is still difficult for us to understand let alone explain to someone else.

We are fortunate that our son is doing so well that most people do not notice that he still cannot bend his elbow without winging his arm out. People just are not very observant and it has helped our son lead a very normal life.

No, he was not an angel sent from heaven so we could mend his wing. He is just a boy and that is all we ever wanted.

He loves animals and they love him. That seems to be his special talent or gift. He makes friends so easily and like many little boys seems only afraid of the dark.

He loves gymnastics classes, swimming, and t-ball and when he was born we did not know if he would ever be able to do all the things he does. It was not the end of the world after all and that is the one point every parent needs to hear.

He writes with his left hand and plays baseball with his right. He does things a little differently but he does them just as well as any other child.

His swim teacher calls him fearless and we are told he must have gills because he has learned how to stay under water for so long. It is easier to swim under water for him as his right arm moves a little slower but when a new swim instructor pulls him to the surface he laughs and giggles. Yes, there is a mischievous twinkle in the eye.

He has gotten bored with fishing but he has actually caught a few fish. My husband was so worried that they wouldn't be able to go fishing when our son was born. He can and does but has too much energy to actually want to stay in a boat for long. Like all kids, he loves to play and that is what he would rather be doing.

TCH helped us give that to our son and gave us hope. It is such a precious gift that cannot be explained but I still think of it as we watch him do all the things we worried he wouldn't be able to.

I hope you are able to reach other families in Maine and have to say, we are so proud of our son and our decision to have surgery. We very happily say we have not one regret after an experience where we really were not sure what to do.

Five years ago we could not understand how something so tragic could have happened to our son. We could not understand why it was not prevented or why we could not protect him. Today, we just see him.

Bar Harbor, Maine
formerly, Augusta

Louise, probably a 4 hour drive from Bar Harbor and Boston to PI about 7 hours, but Louise maybe I drive faster than you!!!! Just teasing!! Plus you are way up North even farther than Presque Isle!!! I agree would love to see some people from New England here!! Talk to you soon Louise. Stacey

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