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Old 06-30-2010, 02:56 PM   #1
J'sMum
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J's Wish Trip Dream Factory/GKTW October 1st-7th 2010

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

Last edited by J'sMum; 07-08-2010 at 09:55 AM.
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Old 06-30-2010, 09:11 PM   #2
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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! 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!
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Old 07-01-2010, 01:16 PM   #3
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Originally Posted by xanphylus View Post
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! 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!
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 !
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Old 07-01-2010, 01:49 PM   #4
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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 !!
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Dance to the petals on the streams running down,
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Dance from the song you feel beat within your heart,
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Old 07-01-2010, 02:31 PM   #5
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Wow! You guys have been through the ringer.

I am also planning a short trip to Disney in October, so maybe we will be there around the same time?
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Old 07-01-2010, 05:04 PM   #6
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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!
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Old 07-01-2010, 08:09 PM   #7
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Wow! You guys have been through the ringer.

I am also planning a short trip to Disney in October, so maybe we will be there around the same time?
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
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-01-2010, 08:12 PM   #8
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Originally Posted by cantwaittoseemickey View Post
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!
Big hugs back !
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

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Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
it beats within you naturally loving from the start.
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Old 07-01-2010, 08:40 PM   #9
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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. she has always loved Mr. Potato Head. Back to more reading for me LOL so i can try and figure something out for them
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Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-01-2010, 09:10 PM   #10
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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.

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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

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Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-01-2010, 09:14 PM   #11
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First, . 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. again!
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Old 07-01-2010, 09:30 PM   #12
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First, . 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
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.
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

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Dance to the petals on the streams running down,
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Dance from the song you feel beat within your heart,
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Old 07-07-2010, 01:41 PM   #13
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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 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.

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

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
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-07-2010, 01:46 PM   #14
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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
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PreTrip Report for J' http://www.disboards.com/showthread.php?t=2499099

Trip Report for J' http://www.disboards.com/showthread....1#post38619970
Dance to the petals on the streams running down,
they're there for you singing, just to lose that frown.
Dance from the song you feel beat within your heart,
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Old 07-07-2010, 08:15 PM   #15
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Hurray for the first family vacation dates!!!

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!

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!
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