Happy New Year 2011! Emily's MAW/GKTW Trip - The Final Gives!

Discussion in 'Pre-Trip Reports and Plans' started by Emilyswish, Oct 29, 2010.

  1. Emilyswish

    Emilyswish Mouseketeer

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    Our daughter, Emily, has been granted a trip to Disney through MAW and we'll be visiting the World and staying at GKTW 12/27/10-1/2/11!!!
    I am brand new to the DISboards and have never been to Disney with the kids, so let me know if I'm doing this wrong!! :thumbsup2

    More on Emily's condition below . . .

    The cast:

    Aimee (33): The very proud mommy to four amazing kids! I love scrapbooking and photography, singing and musical theater. My favorite Disney movie is Beauty and the Beast (The Lion King is a close second - but the princess love story wins out!) I used to be a Kindergarten teacher but resigned when Drew was 2 1/2 so we could focus on growing our family! And boy did we! Now I'm a stay at home mom to 4 after having boy/girl/girl triplets in 2007.

    Gee-off (35): His real name is Geoffrey but EVERYONE calls him Gee-off, including his principal, colleagues, etc. He's a HUGE Philadelphia sports fan and loves his Phillies and Eagles. He also loves singing and musical theater, which is how we met, and video games! Favorite Disney movie: The Lion King.

    Drew (turns 7 right before our big trip!): Big Brother extraordinaire, super reader, soccer fanatic and video game lover. His favorite Disney movie right now is probably Mater's Tall Tales.

    The Trio: (in birth order)

    Carter (3): He is our little peanut, smaller than both of the girls. My little blond haired, blue eyed, snuggle man. He loves, cars, trains, monster trucks and figuring how things work. He is a sensitive little guy and his favorite disney movie is Cars.

    Brenna (3): She is our wild child, diva girl, and social butterfly! She loves to dress up, wear fancy shoes and jewelry and just anything girly or princessy. In fact she actually cries when I make her wear pants! Favorite Disney movie: Beauty and the Beast (She also loves Snow White and we just got Sleeping Beauty!). Fave princesses are Sleeping Beauty, Belle, and Cinderella, probably in that order. ;)

    Emily (3 and our Wish child): Our little sweetheart. For all she has had to endure, she is the sweetest girl you'll meet. She'll melt your heart with a smile or a giggle. She can't really watch TV, but she loves all of the disney movie music.

    We are so excited that Emily has been granted a wish trip to Disney through Make a Wish!!! She is a miracle child and has been through so much in her short life.

    She was born with an extremely rare chromosome disorder, called an Unbalanced Translocation of chromosomes 7 and 9) that has left her facing many medical issues. We did not know about her condition at birth, her issues started appearing at 4 months old, with the onset of her seizure disorder. She is gtube fed, is legally blind with a cortical visual impairment but has awareness of lights and things really close up, she also has epilepsy (seizures called infantile spasms), hypoglycemia, kidney reflux, and global developmental delays. At 3 years old she functions on the level of a 5-6 month old. She can sit up with support, hold small toys, and roll, but she can not crawl, walk, talk, or eat by mouth. She is doing really well right now, and is making progress everyday which is so awesome!! She just started school and it has been fabulous! We love it and she loves it too.

    A friend of mine had given me MAW paperwork when the babies were 1 and at the time I really didn't think it was for us (and by that I mean, we weren't ready to accept that Em has an incurable life threatening condition :( ). But her condition is so rare that we have only heard of 2 other cases in the world (through a chromo disorder website) and there is no data on outcomes or prognosis for this diagnosis. We literally have to take it day by day. So when the babies turned 3 this summer I decided to go ahead and fill out the MAW forms now, because we want her to get to go to the Happiest Place on Earth asap! We actually weren't sure we what to wish for for her at first since she couldn't wish for herself, but in the end obviously chose Disney because of their reputation accomodating families with children with disabilities.

    Everything happened very fast for us - our neurologist told me she had gotten the MAW forms and within 2 weeks the volunteers contacted us, we had our meeting, made her wish and about 2 weeks later we found out she was approved!!! We had chosen our dates around my husband's school schedule (he teaches 6th grade Math) and wanted to make sure we did not go in the summer because Emily does not handle the heat well. So we chose Christmas vacation week as our first choice but really never thought we would get to go THIS year!!!! But, our coordinator called and said she had a flight and was 12/27-1/2 ok for us? YES!!!!!! ;)

    She told us about Give Kids the World Village and that they would try to get us in there, but if not we would stay at a Disney Hotel but probably need 2 rooms due to the size of our family. So we crossed our fingers for GKTW. A few days later we got a letter from our coordinator confirming the travel dates and details of rental van, strollers, car seats etc., and it said we were indeed going to stay at GKTW!!!!! Wahoooo!

    So, now I am really excited. We know that Emily won't be able to ride many rides, but we are hoping to see lots of shows, parades and fireworks which she really responds to!!! I'll have to share some pictures, she has the most amazing smile!! Oh, I do LOVE to take pictures! So hopefully you won't mind if I share lots. :)

    I originally found the DIS boards when I was googling "disney with a child in a wheelchair" and found someone's trip report (I have read so many now I can't remember whose was the first, maybe wendygrace?!) I am so glad I found it, I have been reading lots of trip reports, getting the details on GKTW and all the parks.

    I have lots of questions and plan to hang around here often until we leave for our trip! Thanks for having me! :)

    Tentative Schedule
    What I'd like to see/do at each park
    Emily's Story with Pictures Part 1
    Emily's Story with Pictures Part 2
    My homemade countdown calendar
    Daddy's Trip Report on our blog!
     
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  3. Emilyswish

    Emilyswish Mouseketeer

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    Here is the most recent family pic of us

    [​IMG]

    That's me, Brenna, Gee-off, Emily, Drew, and Carter in the front!

    The pic I took for Dh for father's day

    [​IMG]

    Christmas 2009

    [​IMG]

    Halloween 2009

    [​IMG]

    I also have a blog that I kept updated pretty well until earlier this year, the last few months or so are missing. :surfweb:
    www.wecouldnotaskformore.blogspot.com

    Thanks for looking!
     
  4. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    :goodvibes

    If you have not found it yet, follow the link in my signature to get to the disABILITIES Board.
    Near the top of the thread list, you will find the disABILITIES FAQs thread, which should be helpful to you - especially post #3 - and the WISH TRIPPERS CENTRAL thread, which is a thread for families who are going or have gone on MAW trips.

    I think you will find that Emily will be able to go on almost everything that her brothers and sisters go on. For many rides, you will be able to hold her in your lap or next to you, so her not being able to sit without support won't be an issue. Some attractions have seats with low backs, so you will need to support her head if she doesn't have good head control.
     
  5. Emilyswish

    Emilyswish Mouseketeer

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    Thank you Sue! I did read that we should be able to carry her on any ride that doesn't have a height restriction. Does that sound right?

    Luckily my oldest isn't big on thrill rides, so we are only going to be trying the calmer kiddie rides anyway. :yay:
     
  6. billwendy

    billwendy DIS Veteran

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    HI!!!!

    So, do you have any plans yet? The kids are just so adorable!!!! I have been to GKTW before and its just AWESOME!!!!!

    :thumbsup2 for Em's trip!!
     
  7. Emilyswish

    Emilyswish Mouseketeer

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    Hi billwendy (Wendy is my mom's name!) :goodvibes

    Thanks!

    We just have our dates and plane reservations, but I don't have plans as far as what we'll be doing each day yet. It seems that GKTW gives families 3 days WDW, 2 at US, and 1 at SW from what I've read here, but I haven't been told that is the case for us (they didn't didn't tell us anything about tickets and we just wished for DisneyWorld). Is that what all GKTW families get? That'll help with planning for sure!
     
  8. tinytreasures

    tinytreasures DIS Veteran

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    Your family is beautiful
    You are going to love GKTW it is amazing. Take the time to really look around and enjoy it.
    Can't wait to hear all about your plans
    My biggest tip for wish families is to stop and smell the roses.
     
  9. billwendy

    billwendy DIS Veteran

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    Some wishes are a little different if there is something special a child has wished for - like if Emily LOVES poohbear, you should ask for breakfast with pooh to be included in her wish - things like that. When we went last year with the Philly branch of MAW, that is what we got. THere are also other tickets available there for a mini golf course nearby, maybe the space center and a few other places. Im so excited for you to go!!!! Are you bringing any help along with all those beautiful kids????

    There are lots of fun things to do right at GKTW too!!!! parties and horseback riding and a choo choo and a merry go round!!! ITs so fun!!!!:cool1::cool1:
     
  10. Emilyswish

    Emilyswish Mouseketeer

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    Thank you Kathleen, I'll have to check your MAW trip link soon! :)
     
  11. Emilyswish

    Emilyswish Mouseketeer

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    Oh my gosh, I can't even believe how amazing GKTW is just from reading about it on the board here!!! My kids are going to just be in heaven and i am already in tears thinking about how awesome it is going to be that everything will be completely accessible for Em, like the playground and the train, and the bathroom in the villas!!

    i seriously can not wait - i am more excited than the kids, because I know how thrilled they are going to be!!

    We have nurses that help us with Em at home/school but we decided against the nurse coming with us because we just want it to be a family thing. Also, since we're going during the Christmas break our nurses will want to be with their families.

    My hubby and I are a pretty good team, I know it will be overwhelming and exhausting, but we're up for the challenge!!! :banana::banana::banana:
     
  12. Emilyswish

    Emilyswish Mouseketeer

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    Emily is not real particular about characters because of her vision and neurological status, but she does LOVE the color orange, so I think she's a Tigger kind of girl! ;) We do not have any ADRs scheduled, I didn't even know that was a possibility. That's what so great about this board!
     
  13. billwendy

    billwendy DIS Veteran

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    Awwww - maybe a meal at the Crystal Palace? you would want to contact your MAW people ASAP though if there is anything you'd want to add....or even just mentioning to them that she loves orange and would like to meet Tigger!!! lol....:wizard:

    Emily will get a special pass that will help you guys get through lines much more quickly which will help with the kids too!!!

    Does she have a wheelchair? I forgot to mention, Im an OT!!
     
  14. Emilyswish

    Emilyswish Mouseketeer

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    I do have a list of questions I've been thinking of for the coordinator so maybe i'll ask about Tigger!

    Yes, she does have a wheelchair, she uses a Kidkart right now. That's awesome you are an OT, right now we are working with Emily on grasping objects and reaching. She has been holding crayons and paint brushes at school and sometime grips her toys with both hands, she is amazing! :cool1:
     
  15. disneychic2

    disneychic2 DIS Veteran

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    What a beautiful family! :flower3: So glad you get to go to Disney. :dance3: You're family will have such a great time!:yay:
    Enjoy!!!!! pixiedust::cheer2:
    Blessings to you all! :grouphug:
     
  16. Emilyswish

    Emilyswish Mouseketeer

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    Thanks so much Disneychic2!
     
  17. xanphylus

    xanphylus DIS Veteran

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    Your kiddos are super cute!! You will have a great time on your trip. :goodvibes Have a great Halloween tomorrow!!! :thumbsup2
     
  18. MomtoAlexnWilliam

    MomtoAlexnWilliam DIS Veteran

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    Just subbing so I canifollow your pre-trip report! Your family is beautiful!

    You will love it at Christmas!!! We have gone in December 3 times and soon will be going our 4th time! It is my favorite time to go!
     
  19. Emilyswish

    Emilyswish Mouseketeer

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    Thanks xanphylus - we've got 2 cowgirls, a cowboy and ninja turtle ready for trick or treating tomorrow! ;)

    momtoalexnwilliam - which park do you think would be best to spend new year's eve and/or day in? are the crowds just ridiculously crazy?? i mean I know it's going to be very crowded but will it be shoulder to shoulder all day in the parks or bearable?
     
  20. billwendy

    billwendy DIS Veteran

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    Ive only been to the MK on NYE - and its shoulder to shoulder, traffic going one way kind of crowded. They have actually closed the park to more people coming in at times!!! I think it'd be hard to get a wheelchair and stoller through!!!! lol

    Anyone know bout the other parks?
     
  21. xanphylus

    xanphylus DIS Veteran

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    I have a train and a fairy/witch thing for trick or treat! My DS2 is a huge train fan and had to be an engineer driving his train this year. He even says "choo choo treat" instead of trick or treat! lol.

    Can't wait to see some pics of the kiddos!

    I have never been near any holiday to the parks... so I am of no help there. But I do know your GAC card will help a lot at least with the lines- not somuch the crowds, but at least the lines. :goodvibes
     

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