my first post

Discussion in 'disABILITIES!' started by connie005, Feb 24, 2012.

  1. connie005

    connie005 Mouseketeer

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    Hi my name is Connie and i am a mother of 4.
    First off i never thought i would be on this site for disney or wishes(its really weird)still can't get over it.
    my oldest jordan is 19 then its tommy 14 amanda (wish kid) 12 and ryan 4.

    amanda is everything to me my only daughter so happy but everything changed on jordan's birthday last year.she was losing weight she would sleep all the time finally she started getting headaches i went to our local clinic and they said it was her sinuses acting up.they gave meds and we were on our way.
    the meds didn't work so we went to childrens hospital they saw a growth in her nose said we had to see a specialist when we saw the specialist they were not sure so they had her take a scan.they saw a growth big as a golf ball in her sinuses they thought it was cancer so they decided to do a biopsy.

    the biopsy came back negative for cancer we were relieved but also worried cause the docs had no idea what it was.after ct scans ,blood test etc we found out that amanda had wegeners granolomatosis a very rare vasculitis disease.we were floored they told us it is very rare in children infact even looking on the net is difficult.but throughout all this amanda has been amazing.she went through chemotherapy treatments steroid injections nose surgeries and she always held her head up high.she found out about maw through a friend she found online and she called herself!!when i got home from work she said mom i called make a wish today,i was surprised at how amazing she is for doing that.

    we received a call from maw asking for our email so we could print and sign papers so they could get intouch with her doctors.

    3 weeks after that we received our first visit with maw volunteers it was amazing they ask her 3 wishes and of course the first one was disney.

    and that is how i got here i was looking up info on maw disney wishes.i have been reading posts by truly amazing families and its a true blessing to find out that we are not alone in our struggles.

    make a wish said for us to start doing our passports but we do not have a date yet. but i will keep everyone posted:thumbsup2
     
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  3. Bete

    Bete DIS Veteran

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    Make a Wish is trully a wonderful organization.

    I hope your trip is great for Amanda.
     
  4. loveappletrees

    loveappletrees Mouseketeer

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    Welcome Connie, I am a newbie here too.(like less than a week).
    We are planning our sons Rainbow wish trip and that's how I found the board. I have learned alot in a very short time. One tip is to have a notebook handy to jot quick notes down while you read!
    :surfweb:

    -m
     
  5. dclfun

    dclfun DIS Veteran

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    Do you live outside the US? If not, I'm not sure why they would ask for you to do passports just to come to WDW. It's always a good idea to have them but not necessary for travel w/in the US. Keep us posted when you get your dates. Have you been to WDW before or will this be Amanda's first trip?
     
  6. connie005

    connie005 Mouseketeer

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    we live in montreal quebec canada. and yes this is our first trip anywhere.
    the whole family loves disney ever since my first son was born.
    jordan he loved abu from alladin,tommy was always mickey,amanda its beauty and the beast and ryan its buzz and woody.

    in montreal here is mostly french so its very hard to come by english toys for the kids (except walmart when they have it in stock) so amanda is really looking forward for disney its her dream since she`s been little.
     
  7. dclfun

    dclfun DIS Veteran

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    Now I understand about the passports! You will have an amazing trip, especially if it's your first visit. Have you found the WishTrippers thread? There are completed trip reports there as well as trip planning threads to help you. Do you know yet if you will be staying at Give Kids the World ( commonly abbreviated as GKTW) or at another location?
     
  8. loveappletrees

    loveappletrees Mouseketeer

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    Hey Connie : )

    We have to get our passports or my son's wish trip too. They won't start official planning until we get them all in with the other paperwork.

    We are in Alberta now but I did live in Montreal as a child and still have family out there.

    -m
     
  9. connie005

    connie005 Mouseketeer

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    Hi Guys just here to give an update:)

    I received news from shana our maw volunteer she put in the paperwork for amanda's wish yay!!! Amanda is so happy.

    on top of that they will try to also have a small shopping spree for amanda because since she was so sick last summer she had lost alot of weight now since on steroids she has gained to much so she has no summer clothes.

    so they are going to see if they can get some for her. it was funny cause when shana came over for her first visit amanda said please tell us in advance if we get the trip cause i need to by summer clothes so i am not naked at wdw lol!!! she is too funny but she is so excited

    i will keep you guys updated with anymore news
     
  10. connie005

    connie005 Mouseketeer

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    I have been reading from this site a couple of days and i am amazed about how much we can learn about disney.

    i love reading about other wish trippers and their stories it is so uplifting just to see how truly happy the kids are just to get away from the everyday life i can't wait for my family to enjoy that freedom
     
  11. connie005

    connie005 Mouseketeer

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    i wanted to share pictures of my family
    [​IMG][/IMG]
    this is amanda my wish kid when she was diagnosed

    [​IMG][/IMG]
    this is amanda today
     
  12. connie005

    connie005 Mouseketeer

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    my other kids

    [​IMG][/IMG]

    this is my son Tommy he is 14

    [​IMG][/IMG]

    my son Jordan he is 19

    [​IMG][/IMG]

    finally my son Ryan he is 4
     
  13. LilyWDW

    LilyWDW Going to My Happy Place

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    I just wanted to say that I hope you and your family enjoy your trip! Amanda does seem like an amazing young lady and I am sure she will have a great time!

    I have a very good friend who lives in Montreal and I really wish I could afford a trip up that way! Maybe someday!
     
  14. connie005

    connie005 Mouseketeer

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    well hello once again

    I was posting on another thread i just can't find out how to put them both together lol.
    so i will try only to continue here.

    Amanda was in the hospital during her march break (again no fun for her) they came to the conclusion her wegeners is back. this is the news we never wanted to hear. so now amanda has to start over again with chemotherapy and steroids. we go in tomorrow for her chemo.

    we knew it could come back but not this early in the game.

    well maw did get back to us they are going to pay for our passports which i am yelling yaaaaaaayyyyy!! before amanda went it the hospital for march break she wanted to go in may,we talked to her doc but she said to wait 6 months. (amanda is bummed again)

    so we started looking around and amanda saw mnsshp and a huge smile came on her face.

    last year she couldn't go out for Halloween so this would be a better choice

    so we asked maw and today they got back to us saying that everything is good to go i asked if we could go oct 22 and they said they will do their best

    so at least amanda has something good to look forward to while doing her chemo the doc said she has to do at least chemo 9 times every 2 weeks this time last time it was 6.

    i will write soon and try and find out how to put all my posts into 1 lol
     
  15. cm8

    cm8 <font color=blue>Half of the time we're rushing ar

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    I'm sorry to hear of that. I will keep you all in my thoughts and prayers:hug: and :welcome::disrocks:
     
  16. connie005

    connie005 Mouseketeer

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    sorry i've been so busy

    so here is the update :

    Amanda is doing okay she has chemo every 2 weeks after the first week everyone in the house caught a bug we were sick for days.

    but the good news is we recieved a check from maw today for our passports yayyyyyyyy!!!!!

    we are so happy it is finally happening it seems so real now. so next week we will start the passports.

    finally some good news. I can't wait for our trip just to get away from everything and see the kids actually have fun without sickness and hospitals.
    just to focus on fun and imagination and being a kid.
     
  17. connie005

    connie005 Mouseketeer

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    alot of things have been happening lately some good some bad.
    Amanda had a relapse her disease is starting to attak her vision.her doctors started her on a new treatment cause chemo was not working for her.

    she is so patient going through all the tests and needles an hospital visits but i am sure she will pull through this.

    good news is we have our dates yaaaaaa!!!

    it will be oct 21 through the 27th. we will get to o to mnsshp.
    everyone is so happy now we feel its for real.

    i started looking around on the net at wdw the kids can't wait.
    even my youngest started to save all his piggy bank money for disney lol.

    well i will keep you all posted see you soon
     
  18. kandb

    kandb DIS Veteran

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    I am sending Amanda and your family many good wishes. We have gone in Oct and it is a great time to go. Your family will have a fantastic time. Keep us posted.
     
  19. SueM in MN

    SueM in MN combining the teacups with a roller coaster Moderator

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    We've gone in October too.
    It's not usually that busy and is cooler than summer, so a great time to go.
     
  20. stasijane

    stasijane Crazed one

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    Your daughter sounds amazing, and your whole family will soon get some magical memories that will last a life time! Keep holding your head up and I I will be sending prayers your daughters way.
     
  21. Shelly F - Ohio

    Shelly F - Ohio Disney Extraordinaire

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    Hello Connie! Welcome

    Your daughter has amazing hair. I love the color. Glad your trip is in Oct it will be cooler than going in May. May temps can reach 90 + and add the humidity to that YUCK..

    Please feel free to ask us and questions.

    Hope all goes well for your Daughter.
     

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