Need your help!

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Yaritsi's Mom
Posts: 34
Joined: Fri Jan 18, 2008 2:56 am

Need your help!

Post by Yaritsi's Mom »

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.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Need your help!

Post by Carolyn J »

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 J
Adult LOBPI
Yaritsi's Mom
Posts: 34
Joined: Fri Jan 18, 2008 2:56 am

Re: Need your help!

Post by Yaritsi's Mom »

Carolyn,

I will call her, her name is Linda.


Thanks!!!
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Need your help!

Post by Carolyn J »

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
Carolyn J
Adult LOBPI
Yaritsi's Mom
Posts: 34
Joined: Fri Jan 18, 2008 2:56 am

Re: Need your help!

Post by Yaritsi's Mom »

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.
User avatar
Tanya in NY
Posts: 935
Joined: Mon May 03, 2004 10:51 am
Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
Location: NY State
Contact:

Re: Need your help!

Post by Tanya in NY »

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
Tanya in NY
Amber's Mom, ROBPI, 13 years old
my2girls
Posts: 15
Joined: Tue May 13, 2008 8:23 pm

Re: Need your help!

Post by my2girls »

The hotel in City Line is about $140 a night, even with the medical discount. Keep searching, hopefully you will find something less expensive.
Yaritsi's Mom
Posts: 34
Joined: Fri Jan 18, 2008 2:56 am

Re: Need your help!

Post by Yaritsi's Mom »

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.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: Need your help!

Post by Carolyn J »

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.
Carolyn J
Adult LOBPI
Cole's Mommy
Posts: 95
Joined: Sat Dec 15, 2007 2:48 pm

Re: Need your help!

Post by Cole's Mommy »

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
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