Make a Wish Trip Planning

Discussion in 'Pre-Trip Reports and Plans' started by josabbimommy, Apr 5, 2009.

  1. josabbimommy

    josabbimommy Mouseketeer

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    I'm going to start my Pre Trip MAW Report by telling you a little bit about why we're going on a wish trip.

    My husband (Chris) and I are high school sweethearts. We got married two weeks after I graduated from college and we're pregnant within six months of getting married. While this was not the plan, that's the way it happened. We were happy to be having a litte boy, who we decided to name Joseph Franklin (after his great grandfather and grandfather). I went into labor on the one year anniversary of Sept. 11, but didn't deliver until the next day. I had a traumatic delivery experience that culminated with an emergency csection. It was not a good experience. But we had a beautiful baby boy that looked exactly like his daddy. I was excited to be a new mom and couldn't wait to start doing all those mom things. When our son was 4 months old I went back to work and everything was going really well. We had close family members that watched our DS while we were working and being a nurse, I only worked a few days a week anyway. Then one day while at work my husband called to tell me that I needed to get to the hospital, that our 5 month old son was unconscious and seizing and on the way to the hospital. I'm pretty sure my heart stopped at this point and I'm not sure how I drove myself to the hospital. It wasn't until late in the evening (the day was February 19th) that we found out our precious little baby had a tumor in his brain. After being transferred to the Medical College of Virginia, we found out DS had a rare, benign tumor of the brain that cause seizures, developmental delays, and many other yet to be found out problems. It was incurable and DS would never be a normal child. The diagnosis was a Hypothalamic Hammartoma. Now I'm a nurse and a medic on the rescue squad and handle things relatively well, but I don't handle bad news about my baby well.

    So fast forward two years. DS has been having seizures for the past 18 months and they are getting worse and worse. No matter what we do, they keep on getting more frequent until eventually we can't tell when he's seizing and when he's not. The brain surgeon decides that surgery is the answer. They go in, take a small portion of the tumor out and declare him cured! A month later, he starts seizing again. We got back to the doctor. More medications, more tests, more therapy. We get Prenatal testing on the back I'm carrying and find out that she's (yes, my little princess that i always wanted) is fine. Our little Abbigail is welcomed into the world in late July. Three days into my hospital stay, we found out our little princess has a congenital heart defect. I am mad, very mad. I shouldn't have two children that have problems! I wonder what I did to deserve this, who did I make mad! It's hard for me to understand...but that's a different story completely.

    So a year goes by, and DD has an interventional cath to correct the defect in her heart. We're all maintaining. Joseph is in Kindergarten and doing well. He's playing soccer and t-ball. But he's still having seizures and isn't progressing in Speech therapy like he should be. The surgeon recommends to go in and get the rest of the tumor out. We schedule the surgery for July 10th. I take two weeks off from work figuring it will be like his last surgery, where we went in on a Thursday and came home on Monday.

    We got to the hospital (The VCU Medical Center in Richmond, VA) and Joseph is taken to surgery. We wait, and wait and wait. We hit the six hours mark (the amount of time the last surgery took) and I start to get concerned. The OR calls and says there still operating and it's taking longer than expected (Duh!). We wait and wait and wait some more. Finally, 10 1/2 hours after our son went back, he's transported up to the PICU. There were some complications during his surgery the doctor says. He lost a lot of blood. He has a titanium clip in his brain now, forever. He's very sick. He has a long complicated stay in the hospital that contains one set back after another. He's had a stroke because of the long clamp time. He has frontal lobe ischemia. He has a thyroid disorder, problems with his bladder and a thirst disorder. He gets MRSA and has a PICC line placed. He's in the hospital for months. He celebrates his sixth birthday in the hospital. He misses his sister's second birthday. I'm out of work for months at a time. It's a hectic and stressful time in our life. Then I get a phone call from a nice lady at Make a Wish. She says the Child life worker at MCV recommended my son for a wish and they need information on him. I'm amazed. The next thing I know, my son is home (for those keeping track, it's now October 08). The "Wish Team" comes and talks to my son. He says he wants to kiss the "pretty lady" (Snow White) and see Dolphins.

    So we have confirmed our trip dates.
    May 22-28th and we'll be staying at GKTW. We're all so excited (except the hubby, but he'll get there eventually).

    DD Abbigail, Niece Nichole, DS Joseph.
    [​IMG][/IMG]

    Halloween 2008
    [​IMG][/IMG]

    Joseph at his sickest.
    [​IMG][/IMG]
     
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  3. tinytreasures

    tinytreasures DIS Veteran

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  4. BeckySob

    BeckySob Mouseketeer

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    Bless your hearts, you've been through alot! You will find a wealth of information on here.

    We are leaving in 3 days for our MAW/GKTW trip, so when I get back, I will hopefully have some helpful information along with everyone elses!
     
  5. maroo

    maroo DIS Veteran

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    Wow...you guys have been through so much. :grouphug: :grouphug: :grouphug:

    You will have a wonderful trip!

    Can't wait to hear all of your plans. :)

    I put a link to your Trip Report on the first page of the Wish Trippers Unite thread and a link on the last page so some of our Wish Trip veterans and those still planning will see your pre-trippie!

    How is Joseph doing now?
     
  6. WishMom09

    WishMom09 DIS Veteran

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    Your son sounds like a real trooper! Hope he is doing well now!
    Sounds like you are all very deserving of some Disney magic!:yay:
    I can't wait to read your trip plans!
     
  7. 3princesses+aprince

    3princesses+aprince DIS Veteran

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    Aww, how hard that must have been for all of you. I hope he is doing well now, I'm sure he will have a wonderful time in Disney World and at GKTW!! So many nice things have been said about GKTW here.
     
  8. llurgy

    llurgy DIS Veteran

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    Congratulations on your wish trip!! Your family has really been put through the mill and hopefully you get a break for a while and have a great time on your wish trip!!

    BTW.....We need photo's please :laughing:
     
  9. josabbimommy

    josabbimommy Mouseketeer

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    Thank you for asking! Joseph is better now. He goes to Speech, Physical and Occupational Therapy twice a week. Once at school and once at Children's Hospital. He just got tubes for his ears last month and seems to be doing ok. We've decreased one of his seizure meds. He still has a noticeable right sided deficit, although not as pronounced as it used to be. He is working on Pronounciation of his words. He's the most vocal that he's ever been and is enjoying our new Wii. He's totally stoked to be going to Disney World! He loves Snow White!
    It won't me post pics 'til I have 10 posts.
    Darn.
    Let me look at some other links so I can post.
     
  10. maroo

    maroo DIS Veteran

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    He loves Snow White...how cool! :) I am so glad he is doing better! Once I asked, I was sorta afraid of the answer. I am so thankful he is doing better!!!

    Disney is awesome!

    I have a Wii, too. And I love it. Although I spend a lot more time on the DIS these days than I do playing my Wii. Did you know they were going to make a "Toy Story" game with 3D glasses for the Wii? He will like that!
     
  11. josabbimommy

    josabbimommy Mouseketeer

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    Yay!! I'm so excited! I made two ADR's today!
    The Crystal Palace with Pooh and his friends and Spider-Man at Universal Studios! DD loves Pooh and DS loves Spiderman!
    I tried to get breakfast with Elmo, but apparently he's seasonal at SeaWorld. I'm hoping that maybe he'll be there over Memorial Day, **keeping fingers crossed**
     
  12. josabbimommy

    josabbimommy Mouseketeer

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    I'm trying to get to ten so I can post my pictures.
     
  13. josabbimommy

    josabbimommy Mouseketeer

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    Abbi with her "CAT!"[​IMG]

    Joseph with his ornament. [​IMG]

    Christmas 2008: DD Abbigal, Niece Nichole, DS Joseph [​IMG]

    DS at his sickest. [​IMG]

    The best picture in the world: my son walking! (with Daddy) [​IMG]
     
  14. maroo

    maroo DIS Veteran

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    Woo Hoo!!! TEN posts!

    It took me days to get 10 posts! :)

    Congrats!! :)
     
  15. queengonzo

    queengonzo Earning My Ears

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    YAY!! i am so happy for all of ya'll!!

    our wish trip is april 18-24 so i will let you know how that goes!!

    GOD BLESS YOU and YOUR FAMILY!!!

    take care,
    maria
     
  16. 3princesses+aprince

    3princesses+aprince DIS Veteran

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    All right 10 posts, lets see some pictures!!!!!!!
     
  17. josabbimommy

    josabbimommy Mouseketeer

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    I uploaded them last night and am waiting to have them approved by the mod.
     
  18. maroo

    maroo DIS Veteran

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    ?? I am really confused... Where did you upload them that you are having to wait? I have never had to wait...:confused3
     
  19. HeatherSue

    HeatherSue Join Date: March 2004

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    I am in tears reading about all you and your family have been through. :hug: I can't wait to hear more about your planning and your Wish trip!!
     
  20. HeatherSue

    HeatherSue Join Date: March 2004

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    Here's a tutorial on posting pictures that I got from the Disboutique thread:

    1. Upload the pic of your choice to photobucket
    2. Resize the pic in photobucket click on the thumbnail of the picture, it will open up, then click (above the pic)> resize > 15" screen- it will make you verify that you would like to resize the pic (I like the 800X600 size pictures instead of the message board setting, it shows lots more detail)
    3. After the pic has resized, go to your album, below the pic that you would like to post, there are 4 different codes (email & IM, direct link, html code & IMG code) Click in the box that has the has the IMG code. It will look something like this http: xxxxxxxxxxxxx
    When you click on that box, it will light up in yellow, and say "Copied"
    4. In the thread on the Dis (in another open window), click on "post reply". When you are ready to post the pic, right click - a box will open, click on paste. This will paste the link that you copied from your photobucket account.
    5. Post reply. The pic should show up!
     
  21. disneycrazy2004

    disneycrazy2004 too far away from Disney....

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    OMG, you guys have been thru so much. My heart is with you. You have beautiful children. Hope Joseph is going well and is all excited about you trip. I am sure you all are. Enjoy and can't wait to hear more about it.
     

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