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Old 08-04-2009, 10:03 AM   #1
Terry718
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Richard's Make-A-Wish PTR - 9/26/09-10/02/09

Disclaimer: This is my first attempt at a pre-trip report. I'm slowly learning how to navigate this forum and not very computer literate. So please forgive any rookie mistakes I may make.

Greetings Disney Lovers! As noted in my disclaimer, I am new to all of this. I did not want to post a PTR until I had a bit more experience and had photos ready to include, but as you can see our trip is fast approaching, so I figured I would start now and hopefully improve as time goes on.

For this adventure the cast includes:

Richard - Our Make a Wish child. He will turn nine on August 18th. He loves Star Wars the Clone Wars, video games, and anything military. He's a great kid who has been thru an awful lot which I will explain below.

Katie - She's our princess. She will be four on Monday. She is beautiful inside and out. She has severe autism and is only now learning how to use words. But even without words, she can light up a room with her smile.


Tim - my DH. He's the love of my life. We've been married for ten years and despite all the challenges we've faced, our bond is strong and unwavering.

Terry - ME - Right now I am a stay at home mom. I was a professional with a rewarding career however I needed to put that on hold three years ago when Richard first became ill, which was also right around the time Katie was diagnosed. (Don't tell my husband, but I love being a SAHM!)

Ok - so don't let this be a downer. Our family is "special" but we're also very happy. We may have occasional tears, but for the most part our home is filled with laughter.

So how is it we're going to Disney in less than eight weeks?!! Well, long story short, Richard has cystic fibrosis. He was only recently diagnosed despite years of showing all the classic symptoms and a family history of the disease.

It all began three years ago. Richard was suffering with severe abdominal pain that would be excrutiating one minute and then simply go away. After months and months of taking him to the pediatrician, we finally saw a gastro who discovered Richard's kidneys were obstructed. The right one had some function, the left none. We found an incredible surgeon who attempted to correct the blockages and reconstruct the left kidney with the hope of regaining function. The first surgery went well, but as soon as we were home from the hospital, the coughing began. We were told the coughing was probably from being intubated and it would go away. It didn't.

Richard's coughing progressed to wheezing. I could go on forever describing all the doctors and all the diagnoses we were given. Nothing fit. He did have a sweat test for CF, but it was negative, so we kept looking. Meanwhile, Richard kept getting sicker and sicker. He had bouts of pneumonia, influenza, and staph infections. We were constantly running to the ER because he couldn't breathe. He spent so much time in the hospital, without answers. He missed months of school, underwent so many procedures but no answers. He became depressed and so tired of always being sick.

A few weeks ago, his home nurse arrived to help change some dressings from yet another procedure and Richard was in a foul mood. He told her he hated being sick, he wished he could do all the things he used to do, like play ball, ride his bike, sleep at a friends. Sadly, he remembers the days when he was "well". His nurse, bless her heart, contacted Make-A-Wish - and before you knew it we were booked.

My husband and I are simply overwhelmed over the prospect of this trip and frankly quite humbled by the generosity of strangers. Our initial reaction to MAW was "no way, he's not dying". But the kind hearted wish granters convinced us to put aside our pride and accept their generosity for Richard's sake. He needs this, and with that we agreed.

So our supporting cast will include my parents and two sisters. At home they are a tremendous support for us, and they kindly offered to come along and help. We are staying at GKTW - they are staying at the Contemporary. They will help with Katie so we are free to concentrate on Richard. I have so many worries and fears about Katie's needs overshadowing Richard's wants. Hopefully, they can take care of Katie and Richard will not need to sacrafice one moment of fun for her.

So that's my beginning. I hope it isn't too long for you. I feel like I am on a speeding train, trying to plan - but not plan too much - if you know what I mean. I have a billion questions but don't know where to begin. So I figure I'll spend some time here, learning from you folks.
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Old 08-04-2009, 10:55 AM   #2
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Hurray! You started a TR! I will be following along.
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Old 08-05-2009, 08:34 AM   #3
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I am starting to plan our days. One day at HS, one day at Epcot, one day at MK - you get the idea. Well, Richard's been having a hard time the last couple of days. It is so hot and humid right now and he doesn't do well with the humidity so he has pretty much been homebound the last few days. I thought I would cheer him up by getting him involved in the planning. To my utter horror - he says "Magic Kingdom is for babies" (I swear this is not my kid and I may just have to request a DNA test).

The kid now wants to go to Discovery Cove! How he even knows about Discovery Cove is beyond me, because I never mentioned it. Don't get me wrong, it would be great to spend the day there - but just the three of us would cost $930! We don't really have this kind of cash for one day... and I'm not sure what to do. I need to set up our itinerary and try and make some reservations and this new proclamation has me stalled. Do I just ignore this and possibly regret taking him or bite the bullet and just go?

Oh this planning stuff is so crazy, I'm trying to organize what to do and where and I'm getting a tad overwhelmed. When you have two special needs kids you learn to plan for the worst and hope for the best. You also learn things never go as planned. So as I sit here with my notebook and folders at the ready, I wonder.... is this a waste of time?
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Old 08-05-2009, 09:08 AM   #4
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No this is not a waste of time. Your children will have a lot of fun! That is why the disboards are here! I will be going on our first trip in September so I may not be able to help with some questions. But after researching for over 2 years I know pretty much. But, any question that you have someone will come along and help. This board is great for getting answers, everyone is so helpful.

So, NO, this is not a waste of time. I would say go to Magic Kingdom he will have so much fun once there that he won't even remember calling it a place for babies. There is so much for to do for kids of all ages that he will have a blast!
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Old 08-05-2009, 10:40 AM   #5
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Ok, first I have to admit this brought me straight out of lurkdome this morning.

I have an iPhone, and after a long week, I was actually laying in my bed (yes, it is after 9 AM, but it has been a really long week ) and lurking on the DIS on my iPhone...when I saw this...I got up, went and got my computer, plugged it in and am now typing a note to you!

Magic Kingdom is for Babies?!?! That is so funny. So funny! I am sure heartbreaking for you...but hilarious.

I am standing here with William - who wants to say Hi to Richard...(HI Richard!)

"Richard - My dad's name is Richard. I have been to Disney World and Magic Kingdom is not for babies!! You will LOVE Laugh Floor if you go there. There is a race car track you can drive on. Thunder Mountain is a roller coaster that is AWESOME - not too fast, but still quite fun. And Splash Mountain is definitely not for babies!

Tell him that Mickey's Halloween Party is the BEST. You will get 8 pounds of candy if you stay long enough. The headless knight is the best. There are dance parties, and you can ride the rides at NIGHT which is fun...Tell him to call me!"

Ok...that is all I could get out of William. But he got all excited when he started talking about the Magic Kingdom. For babies. Psaw...

We also looked into Discovery Cove...Which is something I definitely hope to do at some point with Lauren, but unless you extend your trip, I would definitely save it for the next trip.

You are going to get so many tickets and he is going to LOVE the cool stuff.

I am going to PM you. And I am back now (been a crazy week) so I will link this to the main Wish Trippers Thread, too...so hopefully you will get some traffic over here!
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Old 08-05-2009, 03:27 PM   #6
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I am so glad that you decided to start a PTR. I am definatly subscribing.

It seems like our sons have a few things in common. They both have CF (Liam was also dx later in life. Just last Dec. when he was 6. He just turned 7.) and the both like Star Wars the Clone Wars and Video games. He got a Nintendo DS for christmas and oten will play it while he is doing his breathing treatments.

Liam is two years younger, but he is totally excited about MK and MNSSHP. It helped going on Youtube and looking up the diffrent ride names and Mickey's Not So scary Halloween Party and watching some videos.

I can't wait to read more about your trip.
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Old 08-05-2009, 04:39 PM   #7
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MK is not for babies. My DH and I are going to WDW for our honeymoon in September and we're going to MK!

If you're thinking about doing MNSSHP, maybe you could do it before your MK day. After MNSSHP, I doubt he'll think MK is for babies anymore and will look forward to going back to that park.
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Old 08-05-2009, 04:49 PM   #8
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Magic Kingdom is for babies!!! Ah, that made me laugh so hard!

I have the feeling he won't feel that way once he's there.


I love your PTR so far! I can't wait to read more!
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Old 08-07-2009, 09:23 AM   #9
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I was driving to work this morning, thinking about everything I need to do before going to WDW and suddenly thought of this and than though of you.

When I first found this forum I posted a thread in the DisAbilities area about advice for a trip with a child with Cystic Fibrosis. I got some great advice from a mom and I am now passing it on to you.

She told me that she had some enzymes with her (as we all do) but didn't have them in a water proof container. Unfortunatly the pills got wet and were useless so she wanted to make sure I kept Liam's in a water proof container.

I thought it was great advice, so I am passing it on to you. Those enzymes are to expensive to be wasted (even if insurance pays for most or all) and it would be bad to be in the middle of WDW, hungry, and having no enzymes.
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Old 08-08-2009, 09:09 PM   #10
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I haven't updated in a couple of days because things here have been difficult. Richard is fine. Katie is driving me nuts. My little princess goes thru periods of "sleep difficulty" which is a nice way of saying she won't sleep and she won't let anyone else sleep either. For the last five nights she has been up trashing her room, yelling, singing and acting wild. It is very disconcerting. She doesn't nap and if I wasn't living it, I would never believe a child could go on so long without sleep. I've spoken with her neurologist who basically left it up to me - we can "drug" her - or ride it out. I chose to ride it out but I am close to my wits end.

Sorry, this has nothing to do with the Disney Trip. Ok, where to start. First update - I have decided to forgo Discovery Cove. I think you guys were right when you said there is already so much to do and we really only have five days. If we ever get to Florida again, we'll try DC, but not this visit.

Secondly, my parents/sisters are not staying at the Contemporary. Apparently, the Contemporary is under construction or refurbishment. They are staying at the Polynesian. No big difference to us, we're still at GKTW, I think.

The reason I say, I think we're at GKTW is because when I called to make ADRs, I was told we were not registered in the system? Well, it doesn't much matter about their system because all of the ADRs I tried to make were unavailable. I had five different meals planned and none of them could be accomodated. To say I was disappointed is an understatement. I will have to read these DIS boards for hints on the ADRs and try again.

To add to my disappointment, Richard continues with his anti-Magic Kingdom stance. Makes me wonder - why did he make this his wish? Well, I know why really - he wants the Tower of Terror and the Rock-n-Roll rollercoaster and all the big thrill rides. But when I think of Disney, I think of Mickey Mouse. He hates Mickey. There I said it - my own son, my flesh and blood hates Mickey Mouse. (I feel like lightening is going to strike me down for saying those words). I'm working on persuading him, but he's a tough cookie.

On a bright note - I had received some incredible DISigns from the great disigners on this board and I made some really cool T-shirts for our trip. I'm not too crafty, but I have to admit these came out great. I will try and post some pics ASAP. But just to give you an idea of what I'm dealing with - I showed Richard a shirt I made for him - it was a brown t-shirt with a camoflauge mickey head on it. He looked at it and said "That's nice but do you think you could cut the ears off so its just a circle?"

...Give me strength.
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Old 08-09-2009, 01:26 PM   #11
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We will be staying at GKTW for the same week as you.
It's coming up quick!
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Old 08-09-2009, 03:11 PM   #12
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Terry, I just want to say: You HAVE strength! I'm sure you've dealt with a lot of difficult situations involving your adorable kids in the past, and you've made it through them all. You must be a strong woman! Now here's hoping you can get some SLEEP!
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Old 08-09-2009, 05:30 PM   #13
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Congratulations on your upcoming trip, im sure it will be wonderful for all of you

I'm sorry to read everything Richard has been through and how long it took to get diagnosed with CF, I suffer with it myself and it took 9 months pratically for my mum to convince the doctor's something wasn't right and to finally get a diagnoses.

It's a shame you won't get to visit DC but with a short trip it's difficult finding the time to fit everything in and it does cost alot, but i Hope one day you will get to return and Richard get's to go its such an amazing place to spend a day and swimming with dolphins is certainly one of the highlights of my life so far
Shame you couldn't get any of the ADR's you wouldn't either, maybe they will get some cancellations which mean you could at least get a few you wanted.

I can't believe Richard thinks Magic Kingdom is for kids, im 25 and visted WDW 4 years ago now and fell in love witht he park, however im a big kid and love most things Disney.

Look forward to reading more
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Old 08-13-2009, 09:36 AM   #14
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Well, I haven't updated in a bit, so I thought I'd take one of my few quiet moments to write.

There hasn't been much Disney related plans going on. Except of course the great t-shirts I've been making for the kids. Its official, I'm addicted. Everytime I think I'm done, I find another great DISign and off to the store I go for more transfers. I even made a StarWars shirt for my neighbor's son. I'm telling you I am having a hard time putting the iron away!!

No other real plans. Alot of thoughts are swirling in my head, but I haven't made any lists yet and I am the list-queen! I think the trouble with the ADRs has discouraged me. And the fact that Monday was Katie's birthday and all the plans I made for that fell by the wayside. The temperature was over 90 for the first time this summer and she just couldn't handle the heat. So I had a yard full of kids eating cake and icecream and playing in the pool while Katie napped in the air conditioning. She missed the entire party. She came outside, blew out her candles and went back to sleep. Poor thing. I wasn't disappointed, I've learned to expect the unexpected but I felt bad for her. The other kids had a blast and sadly it seems didn't even miss the birthday girl.

Now Tuesday is Richard's ninth birthday and again I've made some plans for a celebration, but who knows... What's great about Rich is he is so easily pleased. And big news... he is finally getting excited about Magic Kingdom. I am trying so hard to convince him its the greatest place on earth and I think it might be sinking in.

So once the birthdays pass, I will buckle down and get organized. Knock wood, everyone's health is good and like so many of you know, that really is all I could hope for.
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Old 08-13-2009, 12:05 PM   #15
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Quote:
Originally Posted by Terry718 View Post
Well, I haven't updated in a bit, so I thought I'd take one of my few quiet moments to write.

There hasn't been much Disney related plans going on. Except of course the great t-shirts I've been making for the kids. Its official, I'm addicted. Everytime I think I'm done, I find another great DISign and off to the store I go for more transfers. I even made a StarWars shirt for my neighbor's son. I'm telling you I am having a hard time putting the iron away!!

No other real plans. Alot of thoughts are swirling in my head, but I haven't made any lists yet and I am the list-queen! I think the trouble with the ADRs has discouraged me. And the fact that Monday was Katie's birthday and all the plans I made for that fell by the wayside. The temperature was over 90 for the first time this summer and she just couldn't handle the heat. So I had a yard full of kids eating cake and icecream and playing in the pool while Katie napped in the air conditioning. She missed the entire party. She came outside, blew out her candles and went back to sleep. Poor thing. I wasn't disappointed, I've learned to expect the unexpected but I felt bad for her. The other kids had a blast and sadly it seems didn't even miss the birthday girl.

Now Tuesday is Richard's ninth birthday and again I've made some plans for a celebration, but who knows... What's great about Rich is he is so easily pleased. And big news... he is finally getting excited about Magic Kingdom. I am trying so hard to convince him its the greatest place on earth and I think it might be sinking in.

So once the birthdays pass, I will buckle down and get organized. Knock wood, everyone's health is good and like so many of you know, that really is all I could hope for.
Kids are funny, aren't they! It sounds like you threw a great party and kept all of the kids distracted and entertained! I am sorry she missed it, though.

This may help your ADR concerns. GKTW is not an official Disney resort. So they won't have any knowledge of your "reservation" there or anything. So don't be afraid...I am sure you staying at GKTW.

PM me the ADR's you are trying to make and I can help you make sure you can get as many as possible and at the times you are looking for.
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