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Old 03-20-2013, 10:35 PM   #3646
JWCJ
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Quote:
Originally Posted by Jakentysmom
Kristy, so sorry about your DH and his job. hopefully he finds one REAL SOON!!!

Today starts our ONE MONTH COUNTDOWN
Eeeeeek! That's so exciting!
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Old 03-20-2013, 10:36 PM   #3647
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Originally Posted by Moodyzblu
Finally finished up our trip report from our MAW trip we took LAST April !!

Sorry it took so long .. but life happens !

I hope you'll check out our latest trip report from Disneyland !! (in progress )

Thank you everyone who went through this journey with us and to all the Big Givers who kept my boys the best dressed and most occupied !!
I love your TRs! Thanks for doing them!
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Old 03-20-2013, 10:38 PM   #3648
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Originally Posted by taliasmom
So...The ladies from make a wish came and it wasn't at all like I thought. The Dr thought it was an inappropriate wish for Talia, MAW actually wants to send her. So we are going to work around it and either convince our Dr otherwise or maybe check with one of her other ones. Still fighting, but at least its winnable.
That sucks that the Dr is hesitant - after all, you should know your daughter best. Glad MAW is on board, and I hope you can either convince the Dr or find a different one.
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Old 03-21-2013, 12:09 AM   #3649
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Originally Posted by JWCJ

That sucks that the Dr is hesitant - after all, you should know your daughter best. Glad MAW is on board, and I hope you can either convince the Dr or find a different one.
We have lots of Doctors, lol. We just Dont want to step on the toes of the first one if it can be helped. I think we'll be okay after we talk to them. I am glad MAW was cool, and feel a bit guilty about any negative thoughts I had. But you know what they say about the word "assume"...
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Old 03-21-2013, 12:22 AM   #3650
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We have lots of Doctors, lol. We just Dont want to step on the toes of the first one if it can be helped. I think we'll be okay after we talk to them. I am glad MAW was cool, and feel a bit guilty about any negative thoughts I had. But you know what they say about the word "assume"...
Sorry, "find" was definitely the wrong word. I meant more find one of your other ones....
Lol, I would have assumed the same as you did. I remember you mentioning the reaction at Disney commercials - could you film that and have MAW (or if necessary, you, I suppose) show your Dr?
I do remember reading a MAW PTR in which the child was essentially nonverbal - I'm on my phone, so can't find at the moment, but I believe the wish was to meet Cars at Disneyland. That might have some tips.
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Old 03-21-2013, 09:49 AM   #3651
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I love your TRs! Thanks for doing them!
Awe thanks .. I try !
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Old 03-21-2013, 10:53 AM   #3652
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Originally Posted by taliasmom View Post
So...The ladies from make a wish came and it wasn't at all like I thought. The Dr thought it was an inappropriate wish for Talia, MAW actually wants to send her. So we are going to work around it and either convince our Dr otherwise or maybe check with one of her other ones. Still fighting, but at least its winnable.
Did the doctor explain why he didn't think it was an appropriate wish? Sorry if u have already explain this, I am new to the board
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Old 03-21-2013, 11:12 AM   #3653
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Originally Posted by nickmo06

Did the doctor explain why he didn't think it was an appropriate wish? Sorry if u have already explain this, I am new to the board
Not really, the Dr always thinks Talia can't see, but she is far sighted, living with her its pretty obvious she can still see, not 20/20, but she still enjoys things. The only other concern I can think of would be the fear that we would put her on thrill rides, lol. I can't think of a better wish than gktw, and I would love to hear what the Dr would ?find more appropriate. Furthermore, Talia's condition isn't going to improve, we won't get to bring her back for a return trip in a few years, why deny her, its all about making great memories at this point, let us travel with her while we can. Grrr...well, meeting with the palliative team today, good folks, I think some understandings will be reached.
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Old 03-21-2013, 12:40 PM   #3654
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Originally Posted by taliasmom View Post
Not really, the Dr always thinks Talia can't see, but she is far sighted, living with her its pretty obvious she can still see, not 20/20, but she still enjoys things. The only other concern I can think of would be the fear that we would put her on thrill rides, lol. I can't think of a better wish than gktw, and I would love to hear what the Dr would ?find more appropriate. Furthermore, Talia's condition isn't going to improve, we won't get to bring her back for a return trip in a few years, why deny her, its all about making great memories at this point, let us travel with her while we can. Grrr...well, meeting with the palliative team today, good folks, I think some understandings will be reached.
This really bugs me .. I mean let the child enjoy this wonderful trip that is being offered to her. Even if you guys didn't do all the parks .. there is so much more to it than that. It's about being treated special and giving these kids special treatment. I sure hope you can discuss this with the Dr and convince him that this is something you want/need to do for your child. Lets us know how it goes ! (also, like a pp asked, what WOULD be appropriate ??)
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Old 03-21-2013, 03:47 PM   #3655
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Originally Posted by angel's momma View Post
nickmo06. Here's how to start a pre-trip report http://www.disboards.com/showpost.ph...&postcount=713 , and how to make a link for it for your signature http://www.disboards.com/showpost.ph...&postcount=470 . Looking forward to reading about your son, so glad that he's getting his wish.
Hi I made my PTR report so now how do I post it on the MAKE A WISH Unite board and how do I post a new thread on that baord
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Old 03-21-2013, 03:48 PM   #3656
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Can one of you families from down south please adopt me? I have shovelled the driveway 3 times today. We got 6 inches of snow over the weekend, and are in the midst of getting another 12 inches. WHERE IS SPRING?!?!?!?
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Old 03-21-2013, 03:57 PM   #3657
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Hi I made my PTR report so now how do I post it on the MAKE A WISH Unite board and how do I post a new thread on that baord
You made a new thread with your PTR already? To post it here, just open the PTR thread and copy what's in the address bar at the top of your window. Then come here and paste it. Is that what you mean?

Or you can create a signature and put the link in it: http://www.disboards.com/showpost.ph...&postcount=470
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Old 03-21-2013, 04:05 PM   #3658
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Can one of you families from down south please adopt me? I have shovelled the driveway 3 times today. We got 6 inches of snow over the weekend, and are in the midst of getting another 12 inches. WHERE IS SPRING?!?!?!?
We're not much better here in New England! Our winter has been INSANE! I keep thinking to myself "only 38 days until FL!" And I actually left Florida and moved to this madness!
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Old 03-21-2013, 05:53 PM   #3659
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We're not much better here in New England! Our winter has been INSANE! I keep thinking to myself "only 38 days until FL!" And I actually left Florida and moved to this madness!
I moved here (Massachusetts) from Florida too .. what was I thinking ??
It's been such a horrid winter .. I am so ready for it to be over !
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Old 03-21-2013, 06:14 PM   #3660
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Kristy~ So sorry about DH's job. Things have got to start getting better, you all have been through so much.

Charlott~ Keep pushing, you are the parent and know your child the best.

Tomorrow is the official 14 day mark until we leave!!! :cool1 :
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