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Old 02-17-2010, 02:43 PM   #31
kmparrish5
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Originally Posted by Mtopher4 View Post
Ok I had to post this picture bigger :-) This was taken at Medical City Dallas in the Child Life Dept right before Ashley's surgery in Jan. It's amazing how quikly they learn exactly where all ths real Dr. Stuff goes. Child Life gave her a Dr. kit full of real Dr. stuff that she uses to play Dr. on her bear and dolls.It's so cute. She also has her pulse ox and suction machine she plays with too.

waiting for surgery after getting some goofy juice aka versed
I just wanted to say hello. Hope you have a wonderful trip. This picture is so familiar to us. We use the same hospital and possibly the same doctor. It sometimes feels like our second home. Your children are adorable. This will be the trip of a lifetime.
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Old 02-17-2010, 05:23 PM   #32
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Kristy.... Just looked at your TR.. I am so sorry about all the rain. Your kids looked like they had a blast. Seeing all the GTKW Stuff is making me rethink the 4 night cruise What an amazing place...Can only Wish kids going to Disney World visit there?

What chapter did your trip? Are you involved with CCA? I'm sending you a PM :-) We used to see Salyer and when he retired switched to Fearon.

On another note..our chapter won't allow us to pay for a day or two a Disney World I don't understand why some chapters do and some don't ..why some do the land and sea trips and some don't..why some throw parties as send offs and some don't. Don't get me wrong..I am thrilled that my daughter has been approved for her wish and will graciously take whatever we get. Just curious why things are so different everywhere.

Still waiting on our date... I need to schedule Ashley's next surgery around it so I hope to hear back soon.
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Disney Fantasy Apert Cruise May 11-18, 2013
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May 9-13th
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Old 02-18-2010, 02:44 AM   #33
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Well, I just erased my long reply.
I understand mixing up the families and the stories. It's fun to meet so many new friends here but it's hard to keep people straight.
Phoebe is undiagnosed, but probably has a genetic syndrome. She fits so many of the parameters. They just haven't found which one. We have been very blessed with our encounters with strangers. Some people have used some harsh language but I understand it's because they don't have the vocabulary to know how to phrase it differently. Usually I repeat their question back in the right words. If they say "what's wrong with her?" I say "you mean, what's her diagnosis?". If they ask a personal question and I don't know them well enough to answer, I sometimes ask them "why do you ask?". Little kids are most likely the ones to stare, and I try to break the silence first and offer words for their thoughts, like "isn't her chair cool?" or pre-empt the questions that are likely to follow. If a child asks me how old she is, I answer and then follow it with an explanation that she likes to be near other kids but doesn't talk, or something like that. It makes me cry to think of people laughing at another human being, especially a small child. This sounds bad, but hopefully (?!?) it was teenagers. Their insecurities at least would explain the action, even though it wouldn't justify it.

Well, on to happier moments. Woohoo for no wheelchair today! Another milestone. I'm happy to hear she recovered well from the surgery. Tessa was born with polydactyly (extra digits) and had a surgery done to remove them. I found it somewhat fascinating what they can do with hands and feet to improve function and aesthetics. She started out consulting at the Scottish Rite Hospital in Dallas but we moved to Arizona before she was big enough to have the surgery.

I'm so bummed for you that they won't let you extend. That is the one difference in chapters that I have a hard time understanding. Your trip will still be amazing though!
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Old 02-18-2010, 10:44 AM   #34
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Hi Maroo :-)

Thank you for al the information :-)

I spent quite a few hours looking at Lauren's MAW report :-) So Awesome...
So nice that you got to go with her...
Your pretrippie was on the next page and I missed this!

Thanks for reading Lauren's TR - I had a good time writing it and am glad I did...I have already forgotten some of the things I wrote - some I am sorta glad I forgot?

It was very cool of MAW to send me along!

I am enjoying your pretrippie.

Lauren is able to talk and set people straight when they are rude. Usually Lauren handles things a lot better than me - when they park in a HA space and we can't get out of the van (or back in - when they block the door) - it drives me crazy! But Lauren takes it in stride.

Lauren looks like a typical kid from the chin up (we used to say neck up, but her neck is quite crooked now), so I am sure that totally changes the way she handles kids staring, etc.

I can't imagine, really, how hard that is for all of you guys.
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Old 02-18-2010, 11:23 AM   #35
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Looks like I'm alittle late to the party but wanted to say hi! We went on our Wish trip in December (I'm still working on our TR). Cruise sounds like a lot of fun. It's on our ever growing to-do list although with 4 kids it's hard for me to justify the expense (I prefer multiple vacations over the course of a year and a 'nice' cruise for 6 with airfare would likely eat up the whole budget LOL).


Anyway................just wanted to extend a warm welcome from yet another Wish family. Looking forward to following along! I may not post much but I'll be lurking
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Old 02-18-2010, 12:09 PM   #36
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I have enjoyed your PTR!! and you have inspired me to continue Brian's!! We are leaving on his MAW on 3/27. Waiting for the dates was the worst part!! Now that we have them I spend hours on the cruise boards!!! When you get your dates be sure to look up your cruise and get to chatting with the people you will be traveling with! Maybe get involved in the FE's. (Fish extender's and you give and get treats during your cruise)

I will look forward to your updates!!!
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Old 02-18-2010, 05:30 PM   #37
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Maryn... I already ordered a FE off ebay LOL.. I can't wait.. Had to do something to help pass the time it's killing me. I can't wait to hear about your trip :-) Off to look at your PTR :-)

pacrosby.. Can't wait to read your report :-) Same here..that's why I agreed when Ash wanted to do the cruise..since it's probably double the price as a Disney World trip..this will most likely be our first and last cruise After reading all the great stuff of GKTW making me sad we will miss it though

maroo Your Awesome


Phoebe's Mom... Melissa? Amanda? I am so sorry i forgot I can't imagine not having a diagnosis That would litterally drive me insane. Ash's is a autosomal Fluke But she has a 50% chance of passing it on. I LOVE the way you handle the questions and stares.. I may borrow some of those quotes

Gotta go hang out with the kids...
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Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-18-2010, 07:54 PM   #38
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Maryn... Humm..looking for your PTR
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TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-18-2010, 09:05 PM   #39
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Hey, Lisa! It is Melissa..LOL..so hard to keep up on here until you really get to know everyone. I'll take it as a compliment though, she's a great mom and beautiful person inside and out I'm Amanda..and Piper has CF. Give yourself another week and you'll have everyone down!
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Old 02-18-2010, 10:22 PM   #40
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Thank you Amanda.. I do a better job at keeping the kids straight than I do the Moms :-)

Yeah I got Melissa on the first Guess LOL
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TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-23-2010, 08:32 AM   #41
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:wooho o:

WE Got our Dates :-) May 9-13th :-)

YIPPEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!

How do I change the PTR Title to reflect them?
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TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-23-2010, 09:27 AM   #42
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Following Along!
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Old 02-23-2010, 10:58 AM   #43
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Quote:
Originally Posted by Mtopher4 View Post
:wooho o:

WE Got our Dates :-) May 9-13th :-)

YIPPEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!

How do I change the PTR Title to reflect them?
Lisa, Congrats on your Dates! You will love the cruise! I have emailed you from my ebay email, so please check it out.
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Old 02-23-2010, 04:43 PM   #44
Mtopher4
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Thank you :-)

Do you need to book the dolphin excursion a head of time?
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Lisa, Wife of 18-1/2 years to Mike and Mom to Christopher age 11 and twin girls Ashley and Jessica age 8
TEXAS
Disney Fantasy Apert Cruise May 11-18, 2013
http://www.apert.org/Bock
Ashley'sMAW pre-trip planning http://www.disboards.com/showthread....1#post35407954




May 9-13th
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Old 02-23-2010, 08:10 PM   #45
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Thank you :-)

Do you need to book the dolphin excursion a head of time?
Are you talking about the one at Epcot? The tour?

Or something at Sea World?

Or Discovery Cove?

There are LOTS of dolphin things out there.
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