Wish Trip for Miss Haylee

Discussion in 'Pre-Trip Reports and Plans' started by Haybuggsmom, Jul 20, 2010.

  1. Haybuggsmom

    Haybuggsmom Mouseketeer

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    I have spend the morning reading some of the stories of the Wish trips your children have taken looking to prepare for my Haylee's trip.

    We have been blessed to have been accepted for our trip through the Toby's Dream Foundation in Va Beach.

    Here is a bit about our family.

    I am Renea and I am married to Neal who is in the Army. He is currently in Kuait for his 4th tour.
    I have 4 wonderful children. Jonathan is 20. I don't know how we would do it without him. He is my "heavy lifter" Haylee is pretty heavy. Then there is Amber she is 17 and she is starting nursing classes in the fall so you can imagine how big of a help she is. My precious Dustyn passed in 1997 due to prematurity.

    Then there is Miss Haylee she is 12. She was born at 1lb 11oz (at 26 weeks) She had a terrible start. At one month she went into septic shock (thought to have stemed from a line in her arm) Her body shut down causing a long period of low oxygenation. This caused her to have severe brain damage. She finally came home form the NICU at 5 months old. There was never much expected of her due to her brain damage. But they had not met her yet. She has never walked, talked or eaten on her own but her motivation is incredible. Her doctors were shocked as she learned to clap, rollover and sit up.For 8 years she was on no mediactions but was diagnosed with oral aversion, cortical blindness and CP. At the age of 8 she was diagnosed with epilepsy. Since that day life has gotten harder as we try to control her seizures as best we can.

    Thanks to her Neurologist and Toby's Dream we are now just awaiting our dates for her trip. She loves the colors of the Disney movies and loves riding what she can at Busch Gardens so we thought what a better place for our princess to go.

    Any suggestions or tips will be greatly appreciated!
    Thanks!
    Renea
     
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  3. yinyanggirls

    yinyanggirls DIS Veteran

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    Congrats on being approved for Haylee's wish! How wonderful that your son and daughter are so helpful with their little sis. Will the whole family be going on the trip?
     
  4. maroo

    maroo DIS Veteran

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    Wow! You have your hands full!

    I am so sorry for the loss of your child - no parent should ever have to go through that.

    Haylee sounds really precious!

    Do you know if you will be staying at Give Kids the World? This is a new wish organization that I am not familiar with?

    You guys are going to have a wonderful trip! Can't wait to follow along!
     
  5. Haybuggsmom

    Haybuggsmom Mouseketeer

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    I am so blessed that the kids will be attending with me. My husband asked us to go without him.
     
  6. Haybuggsmom

    Haybuggsmom Mouseketeer

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    Do you know if you will be staying at Give Kids the World? This is a new wish organization that I am not familiar with?

    You guys are going to have a wonderful trip! Can't wait to follow along![/QUOTE]

    We are hoping to stay at GKTW. Her "dream granters" showed us a photo book of the Village.

    Toby's Dream is a small group out of VA Beach.
     
  7. rcq925

    rcq925 Mouseketeer

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    :welcome:

    Glad that you found this board. I have received so much valuble information here! I have a Hayley as well, although spelled a little different.

    I am so glad you have been approved for a trip for Haylee! Sounds like you and your other kids could use a well deserved break as well! So sorry that your husband will not be able to join you, but you can take lots of pictures so he can see it through your eyes!

    Welcome again and I cannot wait to read more about your trip!:goodvibes
     
  8. Haybuggsmom

    Haybuggsmom Mouseketeer

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    [COLOR="darkgreen"][COLOR="darkgreen"]I thought I would go ahead and post a few pics and a little more about us.
    First there is myself and the DH. I was very blessed to have a man like him walk into our lives. Haylee was 2 when I met Neal. We were both 30 and I was convinced that I would not find anyone who would want to take on 3 children one of which would ALWAYS require our care. Not only did he take it on you would never know he was not their dad. In fact I have had people say how "Haylee looks like her daddy!" We just grin.
    Neal is in the Army and has been for over 20 years. He is currently in Kuait for his last tour there before he retires.[/COLOR]
    [​IMG]

    Then there are the big kids.
    Jonathan is now 20. I am so blessed to have hime in my life. He is the comedian of the family. No matter what the situation he can make you crack up laughing. Jonathan has had a few hospital stays of his own. Just before his 18th birthday he was diagnosed with testicular cancer. Two days later he was in surgery. He then spent the summer of his senior year in surgeries to remove lymphnodes anf have a prostesis put in. He is now 2 years cancer free!!! He is living at home and I wouldn't want it any other way. He is a huge help with Haylee. He does work full time but is always there to include her on his time off. be it playing Xbox and "letting her win" or just hanging out while I take Amber to her practices.
    Miss Amber is now 17 and just started driving. Thanks Aund D and Uncle Ray for the car (that has truely been a blessing) Amber is my diva. She is a competitive cheerleader and a great one. She just competed in her first Cheeleading World's (at Disney)a dream she has had since she was 9 years old. Amber will be a senior this year and starting nursing school at the same time. Her schedule keeps us busy but she makes us so proud and has grown into a beautiful young lady.
    [​IMG]

    My children have spent most of their lives with a "special sister". They really don't know the difference. I think that has made them very special people. They have an understanding of others and their feelings that most don't understand. They are always willing to give up their time to help take care of their sister.

    Then there is my sweet Haylee. I don't think we have ever given her the time to think she is different. She goes where ever we do. (with a lot of effort sometimes but she goes) She goes to practices with her sister, has dinner at her brother's work (We love Ruby Tuesdays and the staff), goes to competitions when she can and has even gone to work with mom. We have always tried to make her feel as "normal" as possible. We dont' know how much she understands so we try to make her feel like any other 12 year old. I can't even imagine our lives without her.

    [​IMG]
     
  9. kdzbear

    kdzbear DIS Veteran

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    Welcome! I love the start to your report. I can't wait to hear your plans and help out with advice when I can! :wizard:
     
  10. Mom2mitokids

    Mom2mitokids DIS Veteran

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    Hi everyone,

    Newbie here. Going through all the PTR. So glad Haylee got her wish to go to Disney World. Can't wait to hear more.
     
  11. Haybuggsmom

    Haybuggsmom Mouseketeer

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    Thanks so much!!! I was just reading your story and already feel very connected to your feelings. After loosing my much wanted Dustyn everytime they would tell my Haylee would either die or be in a vegitative state I told them she would be ok. She was so very loved and wanted. I do believe ver special people are chosen to care for our very special children.

    Ready to get back to your story!!
     
  12. Haybuggsmom

    Haybuggsmom Mouseketeer

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    I was just reading your PTR. What a busy life you have. I will be watching for updates!
     
  13. yinyanggirls

    yinyanggirls DIS Veteran

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    Great intro! You have had your hands full over the years, but you have surely been blessed as well. Thanks to your hubby for his service to our country! He sounds like an amazing guy. I'm so glad Jonathon is fully recovered! What a challenge for a young man. No wonder he is so mature. I laughed at Amber being the diva. Every family has to have one, I guess. :rotfl: We take Phoebe everywhere any other kid would go also. I sometimes wonder why I don't see more kids with disabilities out and about. Haylee sounds very much like Phoebe. She CP and PVL (brain damage) and at almost 9 yrs old she is still trying to learn to walk, feed herself, communicate, etc. But she is very motivated so I have hope that she has more skills to show us down the road. Thanks for sharing your family with us!
     
  14. maroo

    maroo DIS Veteran

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    I am sure, if they showed you pictures of GKTW - that you will be able to stay there! :)

    There are a very few wish organizations out there that don't necessarily send kids to the Village, so I just wanted to make sure before I started talking non-stop about it. :rotfl:

    Your family is beautiful. Please tell your DH a heartfelt thanks for his service to us - I can only imagine how hard it is on all of you guys to have him away from home. :hug:

    I totally get the effort it must take to allow Haylee to hang with you guys and totally appreciate the sentiment of not allowing her to really feel disabled. I am not a Mom, but I have spent a considerable amount of time with Lauren (pictured below) and getting her to and from places takes a lot of energy and effort, but it really makes her feel like there are no limits to what she can do - because we (her Mom, Dad, grandparents, and I) really work hard to make sure she can do everything she puts her mind to. We can't make her walk, but we can move away a lot of invisible barriers so that she can do the things she is able.

    Anyway...I just wanted to say that I get how hard that is - and that it is a family effort - and I applaud you for it! She is lucky to have you all! :thumbsup2

    Can't wait to hear more about your trip!! :)
     
  15. Haybuggsmom

    Haybuggsmom Mouseketeer

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    Phoebe does remind me of Haylee. I know she will get more skills. With our special girls they are determined!!
     
  16. Haybuggsmom

    Haybuggsmom Mouseketeer

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    Lauren's story was the first story I read on here. She is so blessed to be surrounded by so many people who love her. I try to show other families that they can still do so much just in other ways!!
     
  17. Haybuggsmom

    Haybuggsmom Mouseketeer

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    Still waiting (impatienty) on our exact dates.
    I did hear form our coordinator this morning that they have all the signatures they need now and they will let me know when the are ready to book the dates.
     
  18. Mom2mitokids

    Mom2mitokids DIS Veteran

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    Hopefully you will hear something soon. I'm patiently waiting for dates too.
     
  19. Mom2mitokids

    Mom2mitokids DIS Veteran

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    Have you hear about a date yet?
     
  20. Haybuggsmom

    Haybuggsmom Mouseketeer

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    NOT YET!!!:confused3
    I have been so hyped that I am getting a little depressed waiting for the dates. The girls and I bought a new suitcase that we can fit all our clothes in and some of Haylee's supplies too. She has so much stuff to bring for her feedings and meds.

    Did anyone have trouble traveling for a week with diapers, feeding supplies and food (Pediasure for Haylee). I am actually considering having her diapers delivered to GKTW so we don't have to carry so much on the plane. (When we get a date of course)

    Sorry, I am a huge organizer and planner. So I get frustrated in "holding patterns" Especially if I have 3-4 weeks to get ready.
     
  21. Haybuggsmom

    Haybuggsmom Mouseketeer

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    GOT OUR DATES!!!!
    Sept 18-25! YEA!!!
    And my parents will be there too. My dad has a convention on the Disney property. He will spend most of his time working but we can still spend some time with him. My parents live in Hawaii. We see my mom quite a bit because she comes in to help with all the grandkids, My dad I see maybe once every 2 years. He is retired Marine but now is a commisary vendor so he can't take time off (except this yearly conference.) SO EXCITED TO SEE MY DADDY!!!!:yay:
     

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