United Brachial Plexus Network, Inc.

Hi,

(I mis-posted this in the BPI Events forum).

I'm going down to PA later this month to Shriners Hospital. I'm very stressed right now because my daughter's father (ex-boyfriend) said he would help with expenses (hotel), he later said that he would only help if he went on the trip with me. I really don't want him to go with me because since we broke up he has done nothing else than make my life impossible, he keeps harassing me to get back with him. Since I told him I wasn't sure I wanted him to go, he said basically he wasn't going to help and now I'm trying to see how I'm going to do this and not cancel her appointment. It really stresses me that he only thinks about himself and not our daughter and her needs. There still is the possibility that he will help at the last minute but I doubt it.

Does anyone know of any organization that can help out with lodging? Any suggestions would really help.

Thanks.

Shriners in Philadelphia has a Ronald McDonald House with shuttle to the hospital.They also can help with transportation if you need it. Call the Clinic Coordinator.
(I can't think of her name right now...LOL)

Carolyn J
Adult


Message was edited by: Carolyn J

Carolyn,

I will call her, her name is Linda.


Thanks!!!

Please post an update for how you are asisted by Linda.
I believe it would be helpful for new families to UBPN.

For future reference I would be able to Bump up your posts. You are in Oregon so it will be helpful to know how Shriner's assists you.

Good Luck.

Hugs,
Carolyn J
LOBPI adult


Message was edited by: Carolyn J

I sent Linda an email yesterday and she responded today. They can only use the Ronald McDonald House for patients who are coming in for surgery or post surgery for therapy because of the volume of patients they receive, which I completely understand and advised to contact my local Shriners. My local Shriners is taking care of my flight right now and once I hear back from the rep I will ask him about assistance with lodging. They are very helpful.

You can get a discount rate at the City Line Holiday Inn http://www.cpmainline.com/ if you mention that you are going to Shriner's Hospital when you book the reservation. The rate depends on the type of room, # of people staying, day of the week you are staying, and availability. I've never had to show anything proving I was going to Shriner's and I've stayed there at least 4-5 times before. There's a pool, restaurants nearby, the rooms are nice, and it is about 10-15 minutes away from the hospital by car/cab.

There's also another hotel that is right on the campus of Temple, but I can't think of the name of it...anyone??? They may offer a discount if you mention that you are going to Shriner's. It's closer, so cab fair would be cheaper. Although, Shriner's may pick you up at the hotel if you can ask Linda for assistance with transportation since your Shrine is already helping out with transportation.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, 5 years old

The hotel in City Line is about $140 a night, even with the medical discount. Keep searching, hopefully you will find something less expensive.

Thank you all. I just received a call from my local shriners stating that they are canceling my flight arrangements because they made an appointment here in Portland, I really want to see a bpi specialist. I'll try to figure it out with them.

Yaritsi's Mother,
Please continue to insist on seeing a BPI Specialist. Refer the Shriner contact you are dealing with to this web site and to Dr. Kozin. I'm sure Dr K will support this need for Yaritsi. But you must be "politely" assertive in order not to get anything less that a ful BPI evaluation.

Good Luck "keep on keeping on".

Carolyn J
LOBPI adult only evaluated at age 66, too late for surgeries now available.

Our local Shriners wanted us to go to Minn (closest to us in NE) I insisted on going to see Dr. Kozin... we were able to "slip by" because in MN they do not see children under 1 year old (and Cole was 11 mo at the time.) When we visited Dr. Kozin I explained this to him. He sent a letter reiterating how important it was for Cole to see him and when I called this time it wasn't even an issue. When I sat down with my sponsor at our local temple, Bill explained to me how they do not want to spend unnecessary funds (which is understandable),but get this...they purchased a $500 ticket to philly when we found the tickets for under 300 on-line. (Of course I informed him of that, and thank goodness, Midwest was willing to cancel the 3 purchased tickets at no charge.)
I agree, with Carolyn..."politely assertive"...which is not always easy when our babies are involved. Best wishes to you. Nicole