United Brachial Plexus Network, Inc.

Well, it is finally here! I have specifics!!

Date: March 8th, Saturday
Time: 10-5
Place: The Long Island Children's Museum
Who will be there: Dr. Nath, Lisa T, Lisa D, and an OT, and possibly a physiatrist who does botox
Cost: still be finalized, probably around $15-18.-
Registration: online forms will be available thru injurednewborn.com early next week (same for UBPN).
Or you can email me with all of your snail mail info and i will mail you a form.
Registration: first form recieved, first form served...appointment times are based on when I receive the form...
Lunch: included in the cost, lunch will be by seatings, your lunch time is based on your appointment time.
Day of Registration: You must arrive at the Museum by 12:00 to register.
Hotel info: there is a Marriott Hotel across the street from the Museum, I have booked some rooms under the name BPI Gathering. The phone number is 1-800-228-9290. The blocked rooms are $129.-per night.

About the Museum: the Museum is about a year old and is totally hands on. It is beautiful! And it is an incredible amount of fun. There are things for kids of all ages to do. Because of the hands on quality of the Museum, they will close their doors if they think they are at capacity. This is why you need to get registered early. One area is time-ticketed, and we will have ample time-tickets. There is also a theatre that shows 3 movies a day (extra cost of $2-) and there is a story-teller/music person aimed at 3 and under (also an $2- extra cost). The facility has so much to do!
You will get a map and directions after the registration forms are in.
The closing date is February 19th.
Oh, the parking is free!
I can't wait to see all of you there!
By the way, if you came to the Zoo, I will automatically send you a form.

claudia

Claudia,
Count me in for help and for coming too! 4 people and I will send our form in.
Kathy

Claudia you know we will be there and of course I will help. Let me know. Will talk to you soon.

Was wondering if we would have only 10 minutes with Dr. Nath again? Even though he didn't evaluate our children in August, I felt rushed trying to ask him all my questions. Also, does anyone know what airport would be closer to fly into (JFK or Laguardia)? And how far is the museum from the airport? Is it close enough to take a cab?

Julie-
The best way to handle the limited amount of time we can give people with the docs at the picnics is to have a list of questions before you come. Unfortunately, we have to vacate the museum at closing time (5pm). So, we have to give everyone some time with Dr. Nath (and the Lisas). As you probably know, he is capable of making diagnoses in a short amount of time, so if you have your questions ready, you can spend more of your time asking him what you want. Also, this time your child will be seen by him, so we are not slowed by the video loading (as we were this summer).

As for Airports...the Museum is in the middle of Long Island, accessable by both the Northern State Parkway and the Southern State Parkway (both via the Meadowbrook Parkway). You could take a cab, though it would get pricey, especially since the Museum is on Long Island and the airports are considered "city." The cabs are all aimed towards the "city." You might do better renting a car or staying over at a hotel. In addition to the Marriott, there is also a Red Roof Inn and a Wingate Inn nearby. The Wingate is closer than the Red Roof Inn. You can call them and see if they have Airport Buses. The area code in Nassau is 516.
hope it helps,
claudia

I want to add to what Claudia said about the timing issue.... although it's impossible to replicate a 'real' visit to texas, when the "team" comes, they can get a little closer. You have time to front a lot of your questions with the lisaX2 and the OT so that often by the time you get to Dr. Nath, much has already been answered.

Julie - I am also curious though - I don't know what state you are from but you say you will be flying in - so I hope you don't take offense to this because it's not being said in a negative way, but why fly to NY if you can fly to Houston and get the extra time you need ? And if you go to Houston, you can then qualify for free medical airfare....

-francine

Francine,

No offense taken. We live up near Lake Ontario (halfway between Buffalo and Syracuse). It would be too long of a drive for us with a 2 yr. old so that is why we were considering flying. I thought the same thing about going to TCH for a clinic appt., but I never tried to get the free airfare before. We have been down there for 2 surgeries and I always thought the free airfare was very difficult to get or was for people who could not afford the airfare. We have to send a video to TCH around Feb./March so I thought that it would be better to see Dr. Nath in person, but maybe we will send the video and then see what he says. If caps. surgery is still recommended then we could make a clinic appt. to get an in-person evaluation.

free airfare is pretty easy to get..I have the listings on my site
http://www.injurednewborn.com/maia/travel.html

also contact Tami Schenck from UBPN tami@ubpn.org so that she can get you the appropriate letter from UBPN to help. (you usually need a letter from a non-profit org to verify your needs)

Although I'd love to meet you in NY it's best to understand upfront that a picnic realistically is still a picnic -it's meant to answer some questions and give you a bit of direction... but if you want a complete medical exam you need to go to Texas.

I know quite a few moms that have gone to Texas for the day (including me)- you get free airfare for you and child - you don't need a hotel - you're there only for your appointment and lunch. The only cost is the taxi to get you to the hospital and back and parking for your car at the airport at home. Sometimes it's taken me that long and cost me the same to go down to my local children's hospital on a bad traffic day! LOL

-francine

Wow! I must jump into this discussion. My name is Stephanie, and I too will be at the NY picnic and we are struggling with whether our 11 month old needs secondary surgery or not. We've had several opinions here in PA that he does not need it, but when we hear of success stories, we think that he could benefit. I had no idea it was relatively easy to get free airfare. That has been one of our hang-ups for not going to Texas sooner. Thank you for the info! I don't know why I wasn't on this message board sooner!