make a wish trip pre trip!

Discussion in 'Pre-Trip Reports and Plans' started by rosieari9197, Apr 7, 2011.

  1. rosieari9197

    rosieari9197 Earning My Ears

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    hi every one my name is leah cohen and my husband is michael cohen and we have two beautiful children . rosie is almost 12 and ari is 8. ari has been granted a wish from the make a wish foundation here were we live in south florida. ari has a rare chromosome disorder called trisomy 9 mosaic. its been a rough road and we are so looking forward to his wish coming true. may 9th we will be going for a week to disney world! we will be staying at give kids the world. we are so excited! i am so excited that i found disboards. because this all can be a bit overwhelming. im hoping to meet some other wish moms who have gone or will be going on their make a wish trip and have some good pointer and hints and maybe some secrets to help make this trip even more magical for ari and rosie. ari is a huge fan of blues clues and aris wish granter fran is going to try and get a meet and greet for ari that would be awsome! i will keep u guys posted on that. if any one has any tips on how to make this whole experience easyer for a sibling i would love to get some ideas. also i have no clue how to do the tracker thing?
    i have a blog that i did for ari two summers ago www.myganizzyboy.blogspot.com if u guys wanna check that out since i havent figured out how to post pics yet? lol and it also gives ari's background.i hope to tell u guys all about it as soon as i catch some zzzzzzzzzzzzzz's way to excited when i found out about disboards that its almost 2 in the morning and im still checking it out! i would love to hear from anyone who can help.
    thanx for listening
    leah
     
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  3. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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    :welcome::welcome::welcome: I wanted to once again welcome you to the DIS!!!

    I am between MD appointments and wanted to see if you had figured any of this out, you were on my heart! :flower3: I hope the links I sent you helped and I WILL be back! Post a link to your site (with your trip dates) on the wish trippers thread and Maroo will put your dates on the first page as well when she has time. :goodvibes

    I have to run; however, I will be back! :lovestruc
     
  4. rosieari9197

    rosieari9197 Earning My Ears

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    thanx so much! for thinking of us. i tried posting i hope i got it right!lol the links u sent me were great! i have read some helpful posts about the villas at give kids the world and i cant wait to dive back into some of the posts as soon as ari goes to sleep tonight! i dont know were to post the dates but its may 9th- 16th (or 15th). thanx again for thinking about us only good things!:wave2:
     
  5. tinytreasures

    tinytreasures DIS Veteran

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    My 2 tips are take time to smell the roses and enjoy GKTW because you will never get to go back and stay there. :love:
     
  6. mom2pixies

    mom2pixies DIS Veteran

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    Welcome again! I can't wait to keep reading about your beautiful family and learning about your wish story.

    I can't say as I have any firsthand experience with GKTW (or really Disney for that matter, since I have only been once and it was pre-kids!) but I am a copious notetaker, so I might have some info garnered from these boards that might be useful to you. :)

    I also like to add as much sparkle as I can to my kids' experiences (I'm a giant kid at heart!), and I love to share what sparkle I've found with others. Here's a few things you can do that are free and fun for the kids! Will get them excited for their upcoming trip!

    Contact a Fairy Godmailer (http://www.disboards.com/showthread.php?t=2440121&page=49&highlight=fairy+godmailer)--that's someone who will be going to Disney ahead of you. Basically, the concept is that that person sends your kids postcards of their favourite characters with a little note from the characters stating that they can't wait for your kids' visit. The idea is that when you go, you'll send a postcard to another kid whose trip will be following yours. Like a pay it forward 'fun mail' thing. I'm sure Ari and Rosie would love to receive their own postcards!

    Also, if you are interested, you can sign up for a free Enchanted Call (http://www.disboards.com/showpost.php?p=40557128&postcount=1962). If you have a Disney Movie Rewards account (or if you don't already, you can sign up and register for free), put the code ENCHANTED CALL in and you can order a phone call from your kids' favourite Disney character. (If you want two free calls, you'd have to register your hubby or someone else for another account.)

    I did this for my daughter Brooke for her birthday and she was thrilled! The call is very short (and doesn't allow for your child to answer back or interact the call), but Brooke was just gobsmacked that the Little Mermaid knew it was her birthday!

    Enjoy!
     
  7. mommy2girlswv

    mommy2girlswv Mouseketeer

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    :welcome: Can't wait to see what all you are planning and see if we are going to be at the same park that day. Did you get the PM with my fave websites!!! It's late nap time here :surfweb: and after bedtime :surfweb:.. I love to read PTR and TR. It makes me feel like I'm their..
     
  8. Perrinsmommy

    Perrinsmommy Mouseketeer

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    :welcome: I have learned so much on this board and I'm sure you will too! I'm sure your kids are on cloud 9 :cloud9: like mine! Hope you guys have a great time and if you have any questions feel free to ask!
     
  9. brookerene

    brookerene DIS Veteran

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    Welcome... I'm glad you are here!!!!!!
     
  10. angeque143

    angeque143 Mouseketeer

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    :banana::banana:Glad you found where to do this...Look foward to reading about your plans!! WELCOME!!!
     
  11. rosieari9197

    rosieari9197 Earning My Ears

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    we made this today and the kids were so excited! it was something so small but it added such excitement to the house. rosie added her music sticker and ari his crayon and so let the countdown begin!
     
  12. rosieari9197

    rosieari9197 Earning My Ears

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    Ari was born with trisomy 9 mosaic,a rare chromosomal disorder. his diagnosis was a shock and took nearly a year of testing,medical scares and many therapists and doctors to diagnose. children with this disorder do not thrive,and most often result in death before the first birthday. From the moment Ari was born he struggled and worked every day, every min, and every sec. he couldn't coordinate his suck and swallowand he had severe medical issues related to this. threw aris determination and perseverance he began to thrive. surpassing all the doctors expectations (when i first saw Ari one neurologist said- he was a lump of clay- the nerve of that one! Boy did heprove him wrong!) every time something threatened to take our Ari away- someone above watched and fought for Ari. by the time Ari was three he had been threw early intervention and just a few weeks before his third birthday ari started walking-making him one of the only children with his disorder walking with out the use of a walker before the age of three (thanx to surgery on his spine ari has spina bifida occulta and it can cause the spinal cord to snag on one of the openings on his spine aka a tetheredcord ) his third birthday was a celebration! and a celebration of life- for in 3 years Ari had been put threw the ringer- many hospital stays ,procedures,surgery's and allergic reactions(a simple eye test – he was allergic to the cylco gel they use to dialate the pupils and his organs started to shut down – he was in the hospital for about a week.. he graduated that day- at dougies (his fav. Resturaunt at the time) with all his family ,friends and therapists. then It was time for ari to go to school , this special needs school became our familyl. words cannot even express the amount of love and care and devotion that the staff showed to Ari-whom they all nicknamed little tzadik(righteous one) and Mr. America(due to his waving skills!) he thrived and pushed threw mountains and he conquered. his biggest test came when a simple bronchoscopy turned bad and he stopped breathing(larangical spasam)- even on a respirator Ari fought along with his zaidys and bubbys in heaven to survive- and threw g-ds kindness he pulled threw and went right back to school within a week! that's my Ari! . when Ari turned 5 we faced a huge decision. with all of our family in Florida-and the school system changing we made a bold step and moved to boca raton Florida. From new york. leaving behind his friends ,his therapist and his doctors (thank u Dr. rosen) .). but we moved forward -and that's how it went- Ari thrived and his health improved in sunny Florida. and best of all his quality of life improved by being next to his bubby and zaidy (ari’s sister rosie now had a place to hang out when we were at his dr. app.),his great bubby rochel and all his aunts ,uncles and cousins. support is the biggest thing a special needs family can get- and that's just what we got! as hard as it was-we knew the right decision was made and Ari was enrolled in public school- bec. there were no available schools that would be the best place for Ari that were Jewish. and we were proud of our ari, going to school everyday with his kippa and tzitzis.!!! many teachers came for shabbos and.....my heart was filled because my little tzadik was flourishing. with in the year ari was sitting at a desk and making an x with a green crayon. but best of all he began to expand his sign language(Ari cannot speak and has a hearing loss in both ears he usually wears his blue and green hearing aides) he began communicating in ways that i only dreamed of. and we were happy, we were moving forward and we were proud of all the hard work Ari was doing.
    Ari is now 8 and he continues to work so hard every second of every day to achieve what most kids take for granted. His sister rosie is a gem. She truly is a trooper! She didn’t know what hit her when ari was born! But now she is like a mini therapist! Although there are a lot of times when it is very hard for her . like when ari has his dr apps. Or when ari acts out( he has been diagnosed now with add//adhd )yup along with his extra chromosome why not add to his reseme!!lol . today ari goes to a great school in
    delray beach that has a aac class that is augmentative communication devices are used by all the kids in his class. Although ari loves his dynavox. He communicats so nicely with his sign language. He can sign maybe 150 – 200 words!!!! And the school has given him his own sign interpreter(I wish she could go everywere with ari! Just so she can help others who don’t know sign to understand ari.
    Because of a lot no known on trisomy 9 mosaic ari is closly watched my geneticist, neurologist, cardiologist, gastro, developmental pediatrician, neurosurgeon, orthopedics, ent, and his audiologist. Some appts. Come once a year , some dr like to see us more often- it’s a life long thing here! And that is why aris genetist signed ari up for make a wish foundation.
    Within a day they had called us to say ari was eligible to recive a wish and then the granters would contact us with in a week.
    It is now april and its been a whirlwind of excitement! We met everyone on aris wish team and got right to work in playing his sign game to see what his wish would be.
    Ari wished to go to Disney world with his family and to orlando to meet blues clues his all time fav.!!! And he wants to color with him- and look for blues clues! And so fran his wish granter waved her wand-made the phone calls and the wish was granted! Our trip date is may 9th and we are counting down the days. We are excited and starting to plan the send off party(any ideas are welcomed) . we will be staying with give kids the world and from what I have heard – we are just speechless at the kindness that the show to the kids there.
    We are working hard to make sure that rosie is not left out- in a way- she deals with so much more then ari, because she understands so much more! Hopefully everything will be magical.
    So there is our story- a shortend version at least(could u imagin the long one!!!!
    we will be staying at gktw and doing the disney parks two universal and sea world. lately ari has had a hard time with impulsivity(adhd ish) and we are hoping to have all his meds worked out befor we go!!!!!! i have so much more to add and say and share and ask but i will not get overwhelmed i will take one day at a time.
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  13. p00h4me

    p00h4me Mouseketeer

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  14. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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  15. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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    ENJOY your day!!!
     
  16. blessedmom4

    blessedmom4 WE BELIEVE IN MIRACLES! ~~Nearly twice as many chi

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    How was the trip??? :flower3:
     

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