J's Wish Trip Dream Factory/GKTW October 1st-7th 2010

Discussion in 'Pre-Trip Reports and Plans' started by J'sMum, Jun 30, 2010.

  1. J'sMum

    J'sMum Mouseketeer

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    Hi, Not sure where or how to begin here. I started out with curiousity about gktw and stumbled my way upon these forums. I will start by saying thank you to those of you who have shared your stories and inspired me to write a bit about mine.

    I'll start out with who we are:
    There is ME: Mum - My DH - My DD (17) and my DS (14) Dream Factory Wish Kiddo
    well we have had some pretty bumpy roads along the way, my daughter was always our very ill one, she has had pnumonia countless number of times starting with her first round at 5 months old, and she's had it at least once every year since sometimes multiple times despite having pnumonia shot. she has Asthma and arthritis and a hollow bone in her knee and IBS. and she is not the wish child !
    My son was always colic as a baby, had an umbilical hernia also as a baby that never went away but despite that he seemed very healthy. until at nearly a year old he was anemic. Now my dr blamed me for this and gave me all sorts of information on "food pyramid" etc etc etc it's always interesting when you are a young mother how easily you are dismissed. and I have to add the fact that i nursed my son for 2 years, and obviously gave him food at the proper steps. and what my Dr did not realize is i had chosen to take parenting classes several years prior to having my son. ( NOthing like turning a short story long is there) ok back to my son.
    This went on for several years my son being anemic then not anemic roller coaster.. he grew at a slower rate then my daughter but was very smart so i presumed he was just going to be my lil guy.. then at about 7ish he sorta quit growing now mind you in all this i am dealing with my daughters illnesses and sicknesses so i had not fully become aware that he was not growing fast enough. well in that time frame my son was hit by a car (seperate long story) and that sent things rolling in a different direction.
    OK now my son is past the car accident finally and things seem to be once again getting better and at about my sons 10th birthday it hit me.. He is Tiny ! amazing how on a particular day you notice something that has been right before you. he was so small at age 10 that i could hold him up on my hip comfortably. well i took him for a 2nd physical that year and again he was anemic
    I started giving him 2 vitamins vs 1 per day and making sure he had the breakfast protein drinks along with his regular breakfast jussst in case i was missing something as Dr's were saying it was something i was doing yet again. a couple months later he had lost some serious weight and begun looking pale this was at the end of july of his 10th year at this point. we started taking him to the dr's weekly asking dr after dr what was wrong. they would just shrug it off say he was ok and send us on our way. few weeks later the bleeding began or when my son finally come to me and asked me if blood was normal ... off to dr's that same day .. Dr says oh well maybe e-coli... son now starts to sleep constantly and is becoming paler and paler, a few more months pass and still taking him to the dr's weekly watching him cry in pain he could no longer walk as his ankles hurt dr's said nothing was wrong.. well long story short Christmas Eve was here.. now any kiddo is excited on xmas eve
    not my son
    he was tired and seriously looked like he was from another dimension. the color of him was there is only one way i can describe it and if i try it will just get me crying so i wont even try, its just not a good feeling seeing your child that small and that pale and not care that its christmas cause he is fighting to survive( i just didnt know how much he was fighting).
    family kept saying "oh his father was always pale too" yadda yadda well day after christmas i took him back up to the dr's this time i meet new dr that is still in training. so i am iffy about her
    i finally look at her and ask 1 simple question can you please tell me why my son is anemic? WELL bang.. she looked at me i looked at her course i am in tears at this point cause now i am having to carry my son everywhere he goes he simply cant walk.. she says i want you to go for blood work and i'll see you in a couple days.. my son and i get home after blood work i no more then had just taken his jacket off and boom she wanted to send an ambulance.. hemoglobin was down to almost 4 just under 4 now this was foreign to me i did not know what this meant... but i drove my son cause it is faster then waiting for an ambulance Blood transfusion time.. and thats when life again begun to change... ok so he is admitted finally for testing and dr's are looking at me like i am a horrible woman for letting my son get so ill , i even heard one say something about me out in hallway as i stood in room looking at my son getting someone elses blood .. dont get me wrong i am greatful for the donation and i do donate blood but i was oddly angry that someone elses blood was running into my sons veins when it should be mine.. course when i finally went home to see my daughter for awhile i decided to google up everyone of my sons symptoms and it come up to 2 conclusions .. Leukimia or Crohn's.. BOTH Scared me so it become a waiting game took 1.5 montsh to finally diagnose him and he did in fact have Crohn's disease. his gets so severe that he gets the ulcers inside his mouth in esophagus all thru entire digestive system hios colon already looks black in areas and has several spots dr's could not even get to with a scope. he also gets the ulcers on top of his head and gets a rare crohns rash all over his arms n legs when he is having a severe flareup. with this Crohns he has arthritis .. gets migrains and easily tires.. well this has started a long road of every 6 to 8 weeks he goes in for infusions and takes a slew of drugs in the morning just to try and avoid a flare up. can have no whole grains .. only white breads no fresh fruits and veggies unless its a melon with no seeds.. the list goes on and on .. easily summed up.. If its good for you its bad for him. Even though i was feeding him correctly whole grains plenty of fruits and veggies etc etc for him all those years i was feeding him incorrectly.. so In short Crohn's disease .. before my son was diagnosed i had never heard of it now i wish i never had. there is more to the whole Crohn's than i have listed here as far as complications can go but as far as letting you all know why J' is so in need of this trip and his sister too this would be why... EEgads a book sorry all and sorry for all the typos !!!! and after this background i can start telling more about the Upcoming trip !! something positive finally :D
     
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  3. xanphylus

    xanphylus DIS Veteran

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    :welcome: Hello! It sounds like both your kiddos- and you- could use a great vacation! I don't know much about Crohn's, but I knew someone with it- and he wasn't a big fan of it either! :lmao: Your son must be trooper to deal with all that stuff. Hopefully your trip will make you all so happy, you can forget about it all, just for a little while! :goodvibes
     
  4. J'sMum

    J'sMum Mouseketeer

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    Thank you for the welcome :) and wow I was writing that opening last night shortly after getting home from the hospital with my son for his Infusion.. Next time I will wait a day so I can stay more positive hehe !
     
  5. J'sMum

    J'sMum Mouseketeer

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    Now that we know why J' could use a break and have the chance to be a kiddo again, I guess the next thing would be how did it come about?

    About a year after J' was diagnosed and I started to see the effects it was having on him and his sister and the amount of time the two of them had spent in hospitals and just simply indoors due to many reasons .. if it was snowy or rainy thier arthritis seem to hurt more or they needed to stay within close range of bathroom or they were tired.. This all seemed to be the norm It hit me that all the fun had dissappeared Laughs seemed to be failing and i was simply scared for my kids mental well being.
    I mentioned this to a friend of mine who then in turned started calling around on behalf of my kiddos who then gave me the number to the Dream Factory. Now I am very shy in person or on the phone. I can write a mile a minute but it does take alot for me to reach out in person. Well i will do anything I can to make my children happy so I worked up the nerve to call. I spoke with the most wonderful woman who was so kind and patient and listened to everything I had to say. She then started asking me some very basic screening questions to see if we qualified for my son and she said without a shadow of a doubt he would qualify for a wish.
    This was almost 3 years ago. Unfortunatly life took another oddball turn. and trying for a wish at that point in time was not the right time for my son as he had already told me what he would want if he was ever given the chance. we all know by now what that is .. Disney rides ! any rides. TBH I think my son would have been happy if they had simply said they would give him 1 day anyplace that had a ride.

    Several months ago the woman I had originally spoke to called me to ask what happened with the application (I had never sent it back which again has to do with another long story) I was shocked that someone had remembered that conversation from so long ago and was even wondering. I was scared at this point to even turn an application in because it had been such a long period of time but, she went ahead sent me a new application as information I filled out on original one that I filed in back of my filing cabinet had changed. So application in hand Dr's signatures in hand and a wonderful letter from the Dr as well. as soon as she found out what we were trying to do for J' she decided to write a letter.

    A few weeks ago they called and let me know they had someone who was going to work with us to figure out j's dream and get the ball rolling.

    What wonderful people they are , 2 people come to the house from the organization and sat with my son and I. They not only talked about the dream, but my son, also very shy; who I half expected not to even talk opened up and talked to them as tho he had known them for sometime. I found I even began to ramble on like I do when I start writing.. RARE

    They told my son that very day the wish that he wanted "family vacation to disney" would happen 100% and they even sat with him to show him pictures of GKTW which i am greatful for because that very evening my son started to run fevers of 105+ which ultimatly turned out to be a new flare up of his Crohns Disease.. Goodbye remission but we will get him back there again

    Thats where we stand now. we have been picking dates and looking at flight options since dates we have picked ! now just finding the right flight and from there I am lost as what we are suppose to do.. But we will go with the flow and just see what happens

    My DH , DD and DS (wish kiddo) has never been on a vacation together. not even a short one within our own state. In fact we have never even had a Family picture done with the 4 of us. Last family picture taken was for my DH and I's highschool graduation our daughter was 1yrs old at that point in time. Since then no others. I do not yet own a camera but am hoping too try and get one prior to trip :) so for now while i am doing this pretrip report pics will be limited. I have no current ones available but i do have one of DD and DS together that I will ultimatly share as son as i go back and read post #2 on that one thread TY Maroo for pointing me in the right direction if you happen to end up reading this :)


    OOO 2nd book i better quit writing !!
     
  6. maroo

    maroo DIS Veteran

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    Wow! You guys have been through the ringer. :hug:

    I am also planning a short trip to Disney in October, so maybe we will be there around the same time?
     
  7. cantwaittoseemickey

    cantwaittoseemickey DIS Veteran

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    Hi welcome! I am so sorry your son and your daughter has gone through so much and it too so long to get his diagnosis. I am subbing to your thread and sending you all big hugs!
     
  8. J'sMum

    J'sMum Mouseketeer

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    well hugss back and ty ! Looks like we will be there oct 16 - 22nd Just waiting for plane tickets confirmation on that now GKTW said those dates were available :)
     
  9. J'sMum

    J'sMum Mouseketeer

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    Big hugs back !
     
  10. J'sMum

    J'sMum Mouseketeer

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    I am guessing the next step after getting the confirmation of plane tickets is to start planning which my daughter has already begun.. she picked up a notebook added tabs for all the parks has gone right to town trying to put it all down on paper. Very Cute ! so I am atm very content watching my two kiddos plan things together. Even though they are 14 and 17 in many ways they are very immature for thier ages and in other ways wise beyond thier years as is most of our kiddos (wise beyond years) due to experiences.

    I do have a question about rides - do the roller coasters put alot of pressure on chests as far as asthma goes or do they have asthma warnings etc?

    TBH as much as I am excited for J and his sister to go on this trip I have no idea where to even begin on making sure they have the best possible time. There has been only two things my son said he MUST do and thats meet spongebob to have a picture taken with and ride a ride ... that it so vauge, and my daughter wants to pick a pearl which i am confused if thats at seaworld or epcot or both as i have read off the forums and she wants to go find the mr. potato head store. :rotfl2: she has always loved Mr. Potato Head. Back to more reading for me LOL so i can try and figure something out for them
    :surfweb:
     
  11. J'sMum

    J'sMum Mouseketeer

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    Wish kiddo (left) and his sister (right) just thought it might be nice to put a face to the names :) atm pics are hard to come by until i get a new camera but saving to get one so I can share.

    [​IMG]
     
  12. WeLoveLilo05

    WeLoveLilo05 DIS Veteran

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    First, :hug:. I cannot imagine all that you are (and have) gone through with your kiddos. I swear, sometimes people in the medical field (not all, but the ones I have encountered at least) don't know what is going on and I think its sometimes just easier to put the blame on the parents. We are currently trying to find out what is wrong with DD, she has been constipated constantly for 2 years now, we are currently seeing our 2nd GI DR. DD has been tested for Caliec's Disease and cystic fibrosis (still waiting those test results for CF). For the past 2 years I have been told Miralax, miralax. IT got to the point that DD was hospitalized for dehydration b/c she would not eat or drink b/c she was so constipated (I didn't know b/c she was going, but not emptying herself out fully I guess). She also lost weight and is small for her age (she's almost 6 and is still wearing size 4T clothing). Called the ped twice and they were of no help so I am switching and getting a new ped. No one really knows what is going on with DD, for the past 2 weeks things have seemed normal with her in terms of "going" but she isn't eating like she used to, she used to eat anything I put in front of her, not now, she is very picky.

    Anyway, tried to make the story short, but I look forward to reading your PTR and your TR! You and your family really deserve this trip, enjoy it, your doing such a great job with your kiddos. :hug: again!
     
  13. J'sMum

    J'sMum Mouseketeer

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    Oh yes I know all too well what that is like Has Gi dr done a colonoscopy/endoscopy ? there was no way of knowing what was wrong with J until that was done. I will say a prayer for your DD that she does not have CF. Scary test that is my DD went thru that as well.

    I love this place as sad as it is that many of us are dealing with ill children the hope we get from the planning of the trips and the moments to vent and share helps people (myself included) to not feeling so alone. I am as we all are blessed by these children of ours no matter their conditions and i also believe we have by far more appreciation for the smallest of moments that many parents take for granted. :grouphug:
     
  14. J'sMum

    J'sMum Mouseketeer

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    Well I heard from my sons wish coordinater yesterday! How exciting !! seems dates and exact plans have now changed which is fine by us. Instead of going on the 16th we will be at GKTW from Oct 1 - 7th and we will be going courtesy of wish flight which I still do not know much about:confused3 but my sons coordinater seems very excited about this :)

    I have been reading peoples pretrip reports and trip reports and I almost feel like I am not planning enough. TBH I am not sure where i should even begin on planning. :scared:

    Once I know travel times themselves kids and I will begin the actual planning of the dates that we are there. Sounds like we will be missing the christmas party though that gktw has if we are arriving on a friday and leaving on a thursday which is ok , justy looked and sounded like so much fun for the kids but coinsidering they have never been on vacation before the entire trip will be better then any christmas they have had :laughing:

    I can't wait to at least start getting some solid ideas going !!!
    oh and now I need to change the countdown

    Its so fun to watch the kids talk about the upcoming disney trip. Trip isnt even here yet and we are already experiencing the benefits of such a wonderful gift :flower3:
     
  15. J'sMum

    J'sMum Mouseketeer

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    There Ticker is changed .. and wow that brings it into perspective that I am unsure where to start and its technically so close for a very 1st family vacation :scared1:
     
  16. xanphylus

    xanphylus DIS Veteran

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    Hurray for the first family vacation dates!!! :cool1:

    About the asthma question- I had no real issues with any of the rides with my asthma, but it I have been doing really great as of late too though. I would just make sure you have your rescue inhaler with you- and if in doubt or feeling wheezy- just wait on that ride for a while. I don't recall any real force though on my chest for anything. I dunno if that helps any, but I tried! :goodvibes

    Sounds like they are having a blast planning too! That's great. It gives them something to look forward too!

    Are you thinking about attending the Not So Scary Halloween Party? I think I remember you were going in Oct. That was a blast when we went. I have pics in my TR down below. The party was the best part of the trip. I love Mickey in his costume! :thumbsup2
     
  17. J'sMum

    J'sMum Mouseketeer

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    Thank you for answering me on the asthma question :)
    hearing from another with asthma makes me feel a wee bit better about the ride thing, my ds(wish kiddo) realllly wants me to go on the big rides with him and how can i say no? but Yikes i'm a fraidy cat hehehe but alas for them kiddos i am willing to try anything at least once

    and the planning is very cute my dd decided she needed to redo this entire notebook she had started cause of the date changes , she is trying to make sure the planner/diary is jussst perfect.

    and we was talking about the not so scary halloween because my ds(wish kiddo) has missed the last several years worth of halloween due to his illness
    and we thought it would be a fun thing to do but from what i understand thats a seperate ticket that we would have to buy and seeing as money is tight we will most likely skip it.

    my two would be happy with just the flight there and back so anything inbetween will just be icing on the cake and they both still have no idea just how amazing this trip will truly be.

    I have been giving very minimal info to them other then ticket info itself. at the moment they do not know they can get into the faster line etc. I did let my son know there is a lounge for wish kiddos to go to when they need a rest or if he wanted a quieter bathroom that the one near first aid would be a great one to go to just to let him know that there are ways to stay close to bathrooms etc.

    They just realized today that harry potter was part of this trip and that they will be able to go :) after reading every single book and all the hours n hours n hours of watching those movies they will be able to see it from a different point of view. :cool1:

    My DS (wish kiddo is 14) in some ways so much older than he should be and has missed out on childhood as many of the other kiddos so to see him acting young and giddy and smiling every day i am in 100% melt mode

    my dd is 17 but is more near my sons age, she has also been ill since birth very quiet shy and reserved to give an idea at xmas she barely smiles she just absorbs whats happening and the only way i know she is truly happy is when she is over at her desk writing and humming as she does. BUT lately she is laughing ALOT oh so rare and oh i can go on and on and on about this hehe but i won't

    and this may sound silly but as my son has his wish granted i am getting one of my own granted. we do not have one single family picture we have a few individual ones but none as a unit last one taken was when my dd was 6 months old. This opportunity will finally allow that to happen and i am just as excited as the kids are.. maybe more so ?

    anyways HUGSSSSSS to everyone for sharing your stories and letting us read and for letting me do the same

    :grouphug:
     
  18. xanphylus

    xanphylus DIS Veteran

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    You should soooo ask your wish group about the tickets to the MNSSHP! I have seen some of them include that in the Wish for you-you never know without asking! :goodvibes

    Also- even if you have to dish out for the tickets- you can use them a different day than your other Disney tickets and make yourself a 4th Disney day for a lower cost than adding a regular ticket! You can get in with just the party ticket at 4 pm!!! Great deal if you look at it that way! :goodvibes And the costumes and characters are just too cool. I am so glad we did it- and yes, it was expensive as all get out! But seeing DD as Hannah Montana and DS doing his first real trick or treating (at Disney none the less!!!) was priceless!

    I am glad they are being kids again! I love seeing my DD9 do the same. She acts kinda adultish too- she has her own story.... She is actually my stepdaughter, but closer to me than her mom. Her mom walked out when she was 2 and I guess that brought a lot of the problems on. She has now lived with me for over 5 years and still has issues with people leaving her in places. (Like with my mom -her nana- at the mall. She freaked out- I suppose she thought we were not coming back. :sad1:)

    I am such a Potter freak too! I turned my DD into one as well. It's great! We are surprising her with a trip to Universal for her 10th birthday. I hope I can keep my big old mouth shut! We were going to Disney this year, but allthat got canceled due to a $7000 a/c and heating unit mishap...... bleh! And then we were gonna go for Christmas... gotta change my siggy still.... but we decided we could not afford both trips, so we canceled Disney.... sniff, sniff...:sad1: But it will be a great trip even if we don't get Disney. :cool1:

    Have a great day!!!! :hug:
     
  19. J'sMum

    J'sMum Mouseketeer

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    Aww I think its great that you have taken your DD under your wing and that she now has a great mother :) in time i'm sure she will feel secure again.

    I checked out the not so scary disney and it definatly looks like something we will to add to the agenda :wizard:

    what an awesome B-day surprise !! and bummer on the a/c heating, i have a sneaking idea that after this trip that the dream factory is giving my son and us it will cause a travel bug in my kiddos, hoping that we can get back up on our feet so we can plan a trip after we go to this one for a couple years from now but we'll see medical bills and gas money to and from appts is atypically where any extra funds would go but it will be fun dreaming :eeyore: and since you will be doing universal this time means you can dream/plan your next disney whoohoo :)
     
  20. xanphylus

    xanphylus DIS Veteran

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    The planning and dreaming are sometimes the best part!!! And the past few times for us- the only part..... but hey, as Anne of Green Gables says- It's always fun to look forward to something, even if in the end you can't have it. Anticipation is sometimes the best part, and no one can take that away- Even if there is a big thud at the end of it when you don't get the dream. :goodvibes It wasn't in those exact words, but I really don't feel like looking the quote up. lol:goodvibes

    I dream big and live frugally! If it isn't a great deal- I wait. If it was meant to be- it will be there next time and for a better price! :rotfl2:

    And it also helps if you live close enough to drive to Disney. Kinda helps the dream if the reality is a little closer. If we had to fly, we would never be able to afford it. We are a one income family, so it's a little tight right now- so I completely understand the money bits. I still have medical bills from having my DS- two years ago..... and my husbands neck surgery- about 5 years ago...... :confused3 So yeah.... you could say I know the bills- not quite to the same extent as you.... but I get the gist of it! :lmao:
     
  21. J'sMum

    J'sMum Mouseketeer

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    I LOVE that quote !!! :) and yes I agree the dreaming is so nice to have again and My good guess we are all in pretty much the same boat these days, so sorry to hear about your DH's surgery but glad he's thru it ! we should all write a book together hehehe cause thats one thing that i love about this place, the ability to talk about moments , share moments , get excited, laugh and even cry together through this place !!

    I'm just in this amazingly wonderful mood today despite the clouds and gloomy weather :flower3: and for the moment that has to definatly be due to this trip. For a change we as a family have something fun to talk about :dance3::cheer2::cool1:
     

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