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Old 04-03-2009, 02:28 PM   #1
BeckySob
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Pipers Make a Wish trip to DisneyWorld 4/9-4/15-09

Hello!

I've been lurking around here for about a week now, trying to get as much information as I possibly can, and thought it was only fair of me to share my story as I've been reading some of yours....

My name is Becky and have been married for almost 15 years. We have 3 awesome children, Danny who will be 14 next month, Piper, who is my wish child is soon to be 10 going on 17, and my baby Sophia who is soon to be 3. Don't ask me about the age gaps, I have no idea why or how??





Piper was born with BOR syndrome. She was born with one very small kidney. She is deaf in one ear and is hard of hearing in the other. By the time she was 1 week old, she was put on dialysis. After the first day of that, the catheter got stuck to the inside of her stomache wall and then had to go back into surgery and replace the catheter. After the new catheter was placed, her small kidney decided to kick in. So after some time (you'll have to excuse my memory, for it is shot) she had the catheter removed, and was finally discharged at about 1 month old. Obviously was on many medications due to her kidney wasting her iron, vitamin d, etc. As some of you may know, with chronic kidney disease, your growth, your appetite lacks. She has never taken a baby bottle. (I couldn't nurse her either) She never was hungry. So she had a g-button placed and was fed 24 hours a day through the feeding machine. (thats what I call it) She was a very very small child until now. She didn't start eating food till about 3 years of age. So with that being said, she was a very quiet baby! She never fussed about being hungry!


When Piper was, I think 3 years old, she had her tonsils taken out, and was sent home the very same day. Shame on that doctor. That very night, I had woken up in the middle of the night because I heard something. To this day, i couldn't even tell you what the noise was, but when I did, I went and check on Piper and found her blue. We called 911 and was given instructions as to what to do. I couldn't take her out of her crib right away because she was hooked up to the feeding machine and the tube was through the railings. I was panicking! When she arrived at the hospital, her oxygen level was 17. (If I remember correctly) So for those of you who have children getting their tonsils out, have them stay the night!!!!!

Almost 10 years later ..........
I was blessed to have been able to donate a kidney to Piper in July of '07. We were very lucky to never experience dialysis, or Piper being super sick. (except when she was first born) Since her transplant, she has gained about 20 pounds and grew tall enough to compare to her peers. She is finally IN the growth curve rather than being in the negative percentile all the time! She has been doing fantastic since then. Poor thing has to drink 2 liters of fluids everyday. It wouldn't be so bad if she would like kool-aid, milk (which she never was able to have before transplant because of her diet restrictions) or juice, or even caffeine free pop! She only wants water, and to make my life more difficult, it can't be cold!

Well that is my story as short as i can make it. There is so much more, but don't want to bore you guys any longer.....

So duh, Piper was referred to Make a Wish and wanted to go to DisneyWorld. None of us have ever been there, so this will be a WHOLE new experience for us. MAW has been very generous to us and I am truly grateful and can't wait to give back!


If anyone has any helpful info that I may have overlooked , please do share!
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Old 04-03-2009, 02:38 PM   #2
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You DID IT!!! You did it!!!!

Congrats on starting your pretrip report!!!

I will go and put it on the Wish Trippers thread...unless you have already done it!

I am so glad to hear your story! We can't wait to hear more and hopefully hear about your trip! You are going to have a blast!
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Old 04-03-2009, 02:47 PM   #3
BeckySob
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Quote:
Originally Posted by maroo View Post
You DID IT!!! You did it!!!!

Congrats on starting your pretrip report!!!

I will go and put it on the Wish Trippers thread...unless you have already done it!

I am so glad to hear your story! We can't wait to hear more and hopefully hear about your trip! You are going to have a blast!


Maroo......has anyone ever told you that you are amazing?
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Old 04-03-2009, 03:22 PM   #4
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awwww!! what a WONDERFUL story!! so happy that ya'll are heading out there! as you are leaving, we are coming in!! we are 4/18 -4/24!!! can't wait to hear all the details!!

take care and GOD BLESS!
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Old 04-03-2009, 03:38 PM   #5
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Glad to hear about your upcoming wish trip. Hope you have a great time.

Enjoy, Enjoy, Enjoy!

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Old 04-03-2009, 03:52 PM   #6
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Loved reading about your sweet family! I can't wait to read about your trip plans!
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Old 04-03-2009, 04:08 PM   #7
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Pictures maybe?

Not sure if this will work, as I can see, my first picture didn't show up. Why didn't I take computers in school!!!!!!!???!!!!!!!

If this works, these are a few pictures of my kids:

http://www2.snapfish.com/thumbnailsh...6/t_=151317066
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Old 04-03-2009, 04:20 PM   #8
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I am so glad you started your pretrip. It looks like you are ready to go in just a couple of days. Can't wait to hear about your trip.
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Old 04-03-2009, 04:29 PM   #9
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Welcome!!!! Can't wait to hear more!
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Old 04-03-2009, 05:04 PM   #10
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Thanks so much!

Well.......yes we do leave in just a few more days. I should know exactly how many, because Piper and I made a paper chain together to count down the days. Every day I am reminded as to how many days till we go! Funny story:
When we made the chain, I over estimated how many days, as I'm terrible at math just like computers! ha ha But anyhoo....When it came to 9 more days in actual days, our chain showed that we had 13 more days! AUGH!!!! How in the heck did I miscount that bad? Was that my way of saying, "I'm not ready!!!"

Another thing I did was printed off these journal pages. Piper can write down whatever she did that day, what she liked best and worst, etc. There are also activity pages, such as word finds, and mazes. Thought that was a "cute" touch.

During Christmas time, I went out and bought a luggage set. (after the initial MAW visit) We didn't have any luggage. We never travel. Can't afford it, and my husband doesn't get paid time off. Sucks I know. He even works for one of the biggest construction companies! (Kiewit Construction, anyone heard of em?) Anyhoo....MAW came with the final itinerary and brought very generous gifts for the kids, and gave us a brand new 5 piece luggage set. So here I am, not a traveling family now have 10 suitcases. At least they all fit inside of eachother, because I wouldn't have the space for them! But, don't get me wrong, I am very grateful. I'm hoping it's a sign from God that we will be traveling again!

Should I be packed right now? We leave on Thursday. I should be able to easily because it will be mostly shorts. Lord knows, we won't be needing those anytime soon where I live. We are expecting blizzard conditions starting tomorrow night. I should probably get started.

Anyways....since we will be arriving on a Thursday in the early afternoon, I believe around 3:00p, I am planning on celebrating Christmas at GKTW. I hear Barney is there on Friday mornings, so my little Sophia LOVES Barney, and has mentioned going to give him a HUGE HUG!

After that, ?????? I have no idea! I'm terrible. Well actually, I think we'll go to MK on Monday for sure. Either Friday or Saturday, i want to do a half day at AK and then the other half at Typhoon Lagoon... of course going back to villas for a break first.

Ok, so I'm seeing that Universal is fun? I was originally going to steer away from there, thinking that it was more adult centered? Now I'm hearing, or I mean seeing otherwise?

I want to take a day and go to the beach. My kids have never seen the ocean. Aren't I horrible!

What are these Wish Lounges? Is that for those of us parents who want to get knocked out on cocktails? I'm a thinking that I'm going to need it to cope !!!!

Lets see.....has anyone else been provided with a rental car and needed a car seat? I was told that the car will be equipped with a car seat, but, how do I know that for sure? I've just never heard of that.

Ok, that's it for now.....as you can see, I'm addicted.
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Old 04-05-2009, 12:10 AM   #11
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Hi Becky! We took our wish trip back in November- I haven't posted in a while so I just found your pre-trip report. I can answer a few of your questions. Universal does have some rides that are more "thrill" rides but they also have a Suess area. The Spiderman ride is really cool. Universal was wonderful about giving wish families special treatment. We got our own private meet and greet with the super heroes! A worker just saw us standing there-saw Nathan's "magic button" and offered it to us.

Unfortunately- no adult beverages at the wish lounges-lol! They are lounges for wish families to relax in. We only went to 2 of them- the one in MK and the one by Test Track in Epcot. The one by TT was pretty cool ( it is actually the lounge for GM) because you get to watch the inside of the ride. After you are done with the lounge, you get a pass to go through a back way to get on the ride. My kids thought that was pretty cool!

You will have a wonderful time! I can't wait to hear all about it!

Carol
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Old 04-05-2009, 03:32 PM   #12
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Quote:
Originally Posted by oklamomof4boys View Post
Hi Becky! We took our wish trip back in November- I haven't posted in a while so I just found your pre-trip report. I can answer a few of your questions. Universal does have some rides that are more "thrill" rides but they also have a Suess area. The Spiderman ride is really cool. Universal was wonderful about giving wish families special treatment. We got our own private meet and greet with the super heroes! A worker just saw us standing there-saw Nathan's "magic button" and offered it to us.

Unfortunately- no adult beverages at the wish lounges-lol! They are lounges for wish families to relax in. We only went to 2 of them- the one in MK and the one by Test Track in Epcot. The one by TT was pretty cool ( it is actually the lounge for GM) because you get to watch the inside of the ride. After you are done with the lounge, you get a pass to go through a back way to get on the ride. My kids thought that was pretty cool!

You will have a wonderful time! I can't wait to hear all about it!

Carol

Awesome information about the Test Track!! My kids will be thrilled! Darn it about no adult beverages. I'm thinking that I'm going to need them dealing with 3 kids and the crowds. AUGH!!!! j/k

I'm going to check out your story now.....
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Old 04-05-2009, 09:26 PM   #13
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wow you leave in few days
you are going to have so much fun
Just remember to take it easy and enjoy every moment it goes so fast
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Old 04-08-2009, 05:04 PM   #14
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Hi,

I found your pre-trip report. Your children are beautiful. I love their blonde hair. I just wanted to tell you that don't let anyone get you down about your screen name. My daughter's initials are BEZ and I did not realize when we named her that it was not a good combination until several years later when someone read her initials out loud. Ooops! I love Piper's name. That was my original name for my 8 year old, but then her initials would have been PEZ and my husband said no. Her middle name is after a relative that passed away.

Anyway, I am sorry I went off subject. You and your family will have a great time no matter what you choose to do. I have not been to GKTW, but I have been to WDW and there is not a more magical place. Thank you for sharing your experience with us. Have a great time on your trip!
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Old 04-14-2009, 11:42 AM   #15
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I just wanted you to know that I am thinking about you guys and praying for you today.

I think you are there one more day...which means this is your last full day at Disney...

And I hear there are tornado warnings and generally horrible weather. I am so sorry!!

I am sure you guys are being safe and hopefully you are making the best of the bad weather.

I just wanted you guys to know that we are thinking of you guys!
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