Lily's Wish Tripping (and Mama's PTR!) WDW/GKTW 2/6/11-2/12/11 UPDATED with new pics

Discussion in 'Pre-Trip Reports and Plans' started by hollie1974, Dec 14, 2010.

  1. hollie1974

    hollie1974 Mouseketeer

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    Hiya,
    My name is Hollie and my daughter Lily has been granted a wish by MAW. The volunteers will be here this Saturday and high noon (lol) for our first meeting. :cool1:
    So let me tell you a little about our family. I am a stay at home mom and college student currently attending for my BA in Psychology. I was a full time student but because of Lily's illness I have had to cut back to part time but I am hoping next fall I will be able to attend at full time again. Considering I really want to get my PhD I want get this show in gear! lol

    My husband is Tracy and he is a works full time right down the road from our house (which is great during this crappy ohio weather we have going on right now!) and details cars at a family/locally owned dealership.

    Tracy and I have been together almost 12 years and been married for nine.

    Next up is our son CJ. He is 10 yrs old and while he is not the wish kid, he has had his own issues to overcome. And he has done quite well with that! He was diagnosed with ADHD but I think he is more ADD. While he is pretty hyper at home, at school is he as quiet as a church mouse. He did have some serious focusing troubles but his focus seems to be improving with age as does his ability to settle himself down and try not bounce off the walls. In second grade his grades were c's and d's. During that year he was diagnosed with a writing disability and we put an IEP into place. Since then his grades jumped up to A's and B's and have stayed there! Very proud mama here!

    And finally our wish princess Lily. Everything was perfectly normal with Lily till a month before her 3rd b-day. Despite everything being normal I was a nervous wreck with her, always paranoid that she was going to choke, fall down steps, etc, etc just that something terrible was going to happen to her. Then Dec 14 2009 (yup exactly one year ago) Lily had her first seizure. Walking into that in my precious baby girls room in the middle of the night is probably one of the scariest moments of my life. :sad2:

    Over the past year Lily has had 4 more seizures. 3 of the 5 seizures she has had have been status epilipticus seizure (these are seizures that don't stop without medical intervention). We are VERY, VERY lucky Lily has not suffered any kind of brain damage from her extended seizures (1 was 30 minutes, 1 was an hour and a half and the biggie was 3 and 1/2 hours!). She has bounced back from every seizure with amazing resilience. Our little girl is a fighter :cheer2:

    So jump ahead to Oct 27 (yes I am cutting a lot out but it's a long story. If you are interested please visit Lily's blog at http://lilyfight.blogspot.com) we got the diagnosis that I thought they were crazy for even considering. But genetic testing proved it. Our daughter has a very rare genetic disorder called Canavan. Now here is why I thought they were nuts.....children with traditional Canavan are terribly disabled, they are normally diagnosed at 6 months of age cause they are not hitting their milestones. Children with traditional Canavan don't ever walk, most never talk, they go blind and deaf and very few make it passed their 10th b-day. Now here is my perfectly healthy little girl who just happens to have seizures and they are telling me that she has this horrid disease.
    Well there is a new emerging diagnosis of mild Canavan, which is what Lily has. Lily may have the mildest case of Canavan ever. But there have been so few cases of the mild Canavan they can't tell us what is going to happen to her. The type of Canavan she has is so rare as far as I can find there are only 4 cases of the mild Canavan in the US and they are ALL girls ( and I have been able to speak to ALL their parents which was REALLY nice! Thank you internet!!!). Canavan itself (mild or traditional) is very rare with only about 1000 cases worldwide. Oh and I forgot to mention, Lily will be 4 on jan 14th.

    While this whole thing has been hard on all of us, it has been very devastating on CJ. He worships the ground his sister walks on. In August he witnessed one of her seizures and had to call 911 while my husband gave Lily her emergency seizure meds. He had a hard time after that. He wanted to sleep with her all the time and wanted her to go to school with him! lol
    He has settled down a lot and we have talked a great deal about it.

    Anywho, Lily wants to go to Disney. As a matter of fact her exact words are "I want to be a beautiful princess at disney world with Drache." lol Drache is her first cousin and she is very, very close with him. I don't know if MAW will be able to included Drache in the wish but I certainly hope so.

    We are working on travel dates now. It would be great is we could go the week of her b-day but I'm thinkin that is not going to be enough time for them. So not real sure about they other dates. I was thinking over spring break but my spring break from schools and CJ's are NOT the same week and I just tend to think that WDW is gonna be crazy crowded at that time. So I guess we are looking for ASAP.

    I do have a couple questions maybe someone can answer for me.......
    Because the vast majority of Lily's seizures have not stopped with medical intervention, I really don't want to fly. I figure if we take a train if something happens they can stop at a road crossing and pop her into an ambulance...........I think it is pretty hard to pull a plane over! lol So does MAW give you some choice or control over your transportation?

    Ok so I lied, it was just one question.......lol it's late and I think my brain is shutting down so I am going to post a couple of pics in the next message and go to bed.

    Hollie
     
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  3. hollie1974

    hollie1974 Mouseketeer

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    CJ and Lily
    [​IMG]

    Another CJ and Lily much more recent
    [​IMG]

    CJ, Lily and Drache
    [​IMG]

    Our family
    [​IMG]
     
  4. hollie1974

    hollie1974 Mouseketeer

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    Oh and one more question.......what about strobes on the rides? Are there any?

    Thanks!
    Hollie
     
  5. kailatilear

    kailatilear Mouseketeer

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    :welcome: Hollie. You have a beautiful family and Lily is just adorable. I do know that MAW has gotten families a rental car before due to some families needing to drive and I do believe a few families have taken a train. I am not sure if there needs to be a medical form from Lily's doctor for that or not, every chapter is different.

    I am sorry for all that Lily goes through as well as all your family goes through. It is tough on silibings when their brother or sister has a disease. Hugs to you all.
     
  6. Emilyswish

    Emilyswish Mouseketeer

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    Welcome and congrats on getting a wish!

    My daughter has a seizure disorder as well so I can relate, it's awful. :( Hugs to you and your little girl.

    Emily does not have lights as a trigger, but I borrowed a great book from her principal at school that did list all of the Disney attractions in all 4 parks and all of the possible obstacles for people with disabilities. I know the rides with strobe lights were listed. I returned it, but I'll try to get the name of it for you!
     
  7. brookerene

    brookerene DIS Veteran

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    Welcome.... Congrats on MAW!... I love the photos....Some Disney rides do have strobes on some.... I dont know which ones but the previous poster I'm sure will get that book title for you! Take care and I look forward to following your PTR!:yay::yay::yay:
     
  8. hollie1974

    hollie1974 Mouseketeer

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    Thank you very much!

    :hug:
     
  9. hollie1974

    hollie1974 Mouseketeer

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    Thank you!

    It truly is. I try not to get frustrated with the dr's with their answer's of 'we don't know this and we don't know that' but I appreciate that they are honest. Just wish they could answer some questions like is the keppra going to work this time or do we have more break through seizures coming? Or how come the Diastat has yet to work for her ( THIS is a major problem with me) etc, etc. Just keep on praying and keep my fingers crossed.

    That would be great. Lily was just around some strobes for a small amount of time on Sunday and had no problems but with her we have yet to figure out her triggers so I think we are going to try and play it safe better than sorry.

    :thumbsup2
     
  10. hollie1974

    hollie1974 Mouseketeer

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    Thank you very much!

    I thought there were a few. We went to disney about 6 months before Lily started having the seizures and I seem to remember one of the rides had something like that going on but I can't for the life of me remember which one. I do, however have a very interesting story about our last trip I think I am going to add to this thread. :dance3:
     
  11. tinytreasures

    tinytreasures DIS Veteran

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    Congrats on her trip
    I can't wait to hear all about it :lovestruc
     
  12. hollie1974

    hollie1974 Mouseketeer

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    Ok so I gotta tell you all about our trip in July of 2009 (HOT HOT HOT HOT!!!!!). You know when you don't live in that heat you think, ppffttt Central Fl in July....I can deal! Yeah um not so much! I remember about 10 minutes after being in MK we were all drenched with sweat. Gosh it was crazy! Anyway.....

    Our trip was really cool. We stayed at the Caribbean resort and despite the fact that we got no towel animals or stuffed animal poses it was a really nice place to stay! We spent two days at MK and one day at Typhoon Lagoon (which was AMAZING!).

    But anyway back to the point of this story, it was our last day there. Being mama I was up at 5am. I decided to head outside for a bit because our resort was just sooooooooo beautiful and I wanted to enjoy that beauty all by myself is possible.

    Let me set the scene for you. We were staying in Aruba in the CR. Big beautiful pink buildings. In front and slightly to the left of our building was a beach :beach: (of the lagoon) that had hammock and lots and lots of sand. It was beautiful, but I had already decided that I was NOT going on the beach at 5am with no one around. The day before we had seen some good sized alligators and snapping turtles hanging out in the water. I was NOT looking to be breakfast at Disney!! :scared1:

    So I decided I would sit on a bench 1/2 way between our building and the beach. Now I am coming down the path from our building at this point walking towards the water. I am not very far from the water, there is a big palm tree in front of me, but my eyes are trained on the water for anything that might think I may be tasty. As I turn away from the palm tree to head to the bench I hear this VERY loud rustle behind me. :scared1: I spin around saying "I've never worn alligator boots, I swear!" to find a HUGE great horned owl had popped out of the palm tree and landed just a bit behind me. I watch him for a couple of minutes, waiting to see if he is going to hiss or clack his beak at me (a number of years ago I did birds of prey rescue and rehab and these guys can become really aggressive if provoked). When it seemed that he meant me no harm I want and sat down on the bench. That is when the most amazing thing happened. :love:

    He followed me to the bench! I kid you not! Now mind you, he wasn't sitting on my lap or anything but he was probably only 3 or so feet away from me. I tried to get my camera out to take a pic but every time I made a move towards it, he would make a move like he was out! So we just sat there for a few looking at each other. Then we both kind of just chilled and I started looking around checking everything out without kids or a DH by my side. Every time I would look over the owl was just sitting there chilling. He stayed there with me until the sun came up and people started coming out of their rooms, probably a good 30 minutes. It was just amazing! The only thing I was bummed about was I couldn't get a pic. I tried and tried but he was keeping a close eye on me!

    That's the magic of Disney! pixiedust: That and a bird pooped on my shoulder :rotfl2: at MK! lol They told me that it was good luck! :cool2: Maybe they were right!
     
  13. hollie1974

    hollie1974 Mouseketeer

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    Thank you!! ;)
     
  14. Mom2mitokids

    Mom2mitokids DIS Veteran

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    Hi and welcome to the Disboard. I'm so glad Lily is getting a wish. She sure deserves it. Hoping you get the dates you want. I know all chapters are different, but when I called GKTW they told me the same...They will only pay for siblings to go. My daughter wanted her best friend(they are like sisters) to go, but MAW and GKTW said she can go, but she would have to pay for everything. She can stay with us at GKTW and eat, but that's it. Thankfully her parents and Grandma are paying for her to go. I do hope that Drache is able to go and something can be worked out. They are all cutie pies. Not sure on the strobe lights. My youngest had 20 seizures as a newborn, but nothing since.
     
  15. hollie1974

    hollie1974 Mouseketeer

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    Thank you!
    I hoping worse case they will say he can go and stay at GKTW with us but they can't pay his way into any of the parks. If that is the case we can get the family to come together and pay his way for that. I really hope he can come. Every summer vacation and almost all school breaks he has been with us. So he has been through all the bad with Lily as we have, I would really hate for him to miss the good. :sad2:

    I am glad your little one doesn't have seizures any more! That's great!! :banana:
     
  16. hollie1974

    hollie1974 Mouseketeer

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    So I am sick with a rip roaring head cold and hopefully that's all it is. Normally when I have a head cold it rapidly turns into bronchitis, hoping that is not the case. Both the kids have slightly stuffed noses but they both have diarrhea. Hopefully that is all they will have and it will run it course and go away! It seems we have all been sick on and off for the past month and I am totally over it!

    My school is over for the semester and our benefits are over so I was hoping it would be time t oget my house back in order and get caught up on some laundry. *sigh* guess not.

    Ok I am just really whiney now so I am gonna go lay down. ;)
     
  17. Mom2mitokids

    Mom2mitokids DIS Veteran

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    They will allow him to stay at GKTW and eat. You can have up to 7 people in a villa, but they can't give him theme park tickets. This is what I was told by GKTW. Who knows..maybe they will do it for Drache. You never know until you ask. I will be hoping that he can go.

    I hope you feel better soon.:hug:
     
  18. kaileighbug

    kaileighbug DIS Veteran

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    Hope your little one gets her whole wish. She sure deserves it and it will be fun for the kids to go together.:wizard:
     
  19. hollie1974

    hollie1974 Mouseketeer

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    Thank you and thank you ;)

    I can almost breath out of one nostril today...that's a start!! :lmao:
     
  20. hollie1974

    hollie1974 Mouseketeer

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    Thank you! :)
     
  21. hollie1974

    hollie1974 Mouseketeer

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    So apparently all the kids had was some kind of bug cause they are right as rain today! Yay! :yay:

    And I am starting to feel close to back to normal which means I may avoid bronchitis this time around! Yay! :banana:

    So now I just have to get the house cleaned and the laundry all caught up before our visitors on Saturday at noon. Crap!! It's almost Friday! Looks like I am going to be one busy little bee tomorrow! Glad classes are over for me or I would be in serious trouble! :rotfl:

     

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