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Old 06-25-2008, 10:03 AM   #1
oklamomof4boys
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Nathan's Magical Wish Trip- Pre-trip report

This is my first attempt at a Pre-trip report- so here goes.

First a little background on my wish child- Nathan. This part might be long, feel free to skip it if you aren't interested. ( Hello- Mistymouse! - a fellow wisher who understands the need to share!)

My fourth son, Nathan, was born 7 weeks early, but perfectly healthy. He stayed 6 days in the NICU for some IV antibiotics ( my water had broken a week earlier) and tests to make sure he was ok. My doctor said, " You all must have some great connections 'up there' because this baby is doing better than any 33 weeker I've ever seen!" Two days after we took him home, I noticed he was VERY lethargic and wasn't eating. I stayed up with him all night. Finally decided to take him back to the NICU ( our pediatrician was out of town) to get him checked out. They didn't think it was anything big. My DH didn't even go with me. By the time we reached the hospital, he was nearly gone. His extremities were turning grey, his temp was 95. To make a long story short, ends up he had caught a virus the day he was born ( a very common virus that almost everybody gets and I evidently had the day he was born) and it attacked his heart ( neonatal viral myocarditis). The prognosis was grim. He fought for his life in the NICU for 2 months- at one time we were told to say good bye-numerous ups and downs. But miraculously, he survived and went home on medicine and a heart monitor. At one year old, we were told that they thought he would make a full recovery and they took him off of his meds. Fast forward 2 1/2 years. We were planning a trip to DL ( we had been a few times before as a family and loved it. We planned on going every couple of years). I just had a nervous feeling. I told my husband, " I know I'm probably being paranoid, but I want to take him to the cardiologist for a check up before we go- just to make sure he can ride the rides." We thought we were just going for a routine exam, then a day of shopping. What happened next forever changed our lives. Nathan's heart had become much worse. The statistic they gave us with this disease is 1/3 will get better, 1/3 will stay stable on medication, 1/3 will get worse and need a transplant. He also said Nathan was no longer in the first third. His diagnosis was now dilated cardiomyopathy- his heart is enlarged and doesn't pump very well. Our world was spinning and we turned for comfort to our best friends, Jay and Beth. They had 3 boys close in age to our 4 and they were all best friends. 3 weeks after Nathan's appt., Aaron, their youngest son and Nathan's best friend, drowned in a neighbor's koi pond. Our grief was deep and we almost cancelled our trip to DL. But something magical happened there. For brief moments of time, we actually had relief from the pain. That is when Disney became our magic place and we vowed to get there as often as possible. When we are at Disney, we are just a family having fun together. For a few glorious days, we are able to escape all of the apprehension and fear associated with heart disease. After years of saving money, last summer we took our first ( and what we thought would be only) Disney Cruise! We loved it and booked another-for 2 1/2 torturous years later!


Whew! That was long! Sorry about that! Now onto the present!

Nathan is now a beautiful 9 1/2 year old boy. He takes 10 pills a day, but other than that you would hardly know there was a problem. He is limited in his activities, and has trouble with extreme temperatures and even though he is gifted, he has some problems with his memory ( probably caused by a 72 HOUR seizure he had in the NICU). Also, last year he started having grand mal seizures, but hasn't had one since starting medication! But we know, and he knows, that could all change- he could go into heart failure, either suddenly or gradually, any day. But we try to keep positive and enjoy each and every day.

At the first of this year, Nathan's pediatrician mentioned Make a Wish and we started the paperwork. IN March we got the letter that he was approved for a trip and we would be contacted by our wish coordinator in the next month or so.

Our crazy, Disney obsessed family-

My husband, David ( age 45) as much of a Disney freak as the rest of us
Me, Carol ( age 41)
Tucker ( 16 next month!)
William ( 13)
Samuel ( almost 12) and
our miraculous wish child- Nathan ( 10 in October)
Nathan has 3 of the most wonderful big brothers. When you have a child with a disease, it affects the entire family. Nathan feels invincible, but his brothers worry. Tucker even created a dvd about pediatric cardiomyopathy and presents it at civic groups to raise money and awareness about the disease.

Nathan knew his wish trip would be Disney related- the entire family is crazy about Disney and has no interest in any other kind of vacation!

Once Nathan was approved, we waited, and waited. Finally a couple of weeks ago, we were contacted! We met for ice cream, they brought Nathan a basket full of goodies ( they had called and asked his likes) including Disney golf balls, sticker books, a teddy bear that plays When You Wish Upon a Star, a hat, etc. Nathan LOVES the attention and in the front of his sticker book, where he was supposed to write his name, wrote, " Nathan, wish child". His first choice of trips is a Disney Cruise and second choice is WDW ( we convinced him to do WDW instead of DL since he has never been to WDW and has been to DL numerous times!) Our first choice of times is March, followed by Thanksgiving week and finally next summer ( but summer heat in Florida is hard on him- so we are really hoping for march).

Now, once again, we wait. They said it might take 6 weeks to get approval. Luckily, we have a trip to DL planned for the first of August, and that will help pass the time!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 06-25-2008, 10:23 AM   #2
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subscribing! Been through alot with this kid huh?!! What an emotional roller coaster.
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Old 06-25-2008, 01:51 PM   #3
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I am subbing to this.

Nathan is indeed a special little boy, and a very strong young man. He is lucky to have a great family with great parents!

I am looking forward to hearing all about your magical wish trip. And keeping my fingers crossed for March.
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Old 06-25-2008, 02:55 PM   #4
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I found your Pre-TR!!! Great job so far! Ask Bill about how to link it in your siggie...he could probably explain it better than me!! I can't wait for more!!
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Old 06-25-2008, 05:16 PM   #5
oklamomof4boys
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Picture of Nathan- I hope

I am going to attempt to post a picture of Nathan. Let's hope this works better for me than posting a link in my signature!

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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 06-25-2008, 05:53 PM   #6
oklamomof4boys
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another picture

This is Nathan admiring his Mickey that he drew at Animation Studio. He now draws Mickey Mouse on everything!

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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 07-17-2008, 11:11 PM   #7
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We'll be there at the same time! I'll keep an eye out for you to say hi, have a great trip!
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Old 07-18-2008, 04:45 PM   #8
oklamomof4boys
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I got our ADRs!!!

After reading other threads, I was a little worried about being able to get ADRs. I called today and was able to get everything we wanted.

Mon 11/17- early light lunch at Prime Time Cafe, Fantasmic dinner package at Hollywood and Vine
Tues 11/18 Crystal Palace for dinner
Thurs 11/20 Biergarten for lunch

I also ordered our tickets to MVMCP. We are really starting to get excited. Now I can concentrate again on our trip to DL in 2 weeks!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 07-23-2008, 09:36 AM   #9
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More plans from MAW

A MAW coordinator called the other day. She was confirming everybody's names before she made airline reservations. I asked her, " I'm sure everybody asks this, but if possible we would like early flights on the way out there and late flights on the way home." She said, " Well, if you have time, why don't you stay on the phone while I look at flights and you can pick what you want!" COOL!

We chose flying out of OKC at 9:45 am on Sunday Nov. 16. There was a 7:30 am flight but it had a longer layover and only got us to Orlando an hour earlier. Since we have a 90 minute drive to the airport, we decided that it wasn't worth it. I did find out that it wasn't " in the budget" to give us a hotel room in OKC the night before but that is okay. We might do Priceline for a room anyway so we get more sleep. Also, I had read of others getting limo rides to the airport. I had held little hope for that since we live so far away from the airport- but it would have been so cool. The boys have never been in a limo ( and I only have at my wedding!) But I also knew that having a family of 6, the trip was going to be expensive for them.

Anyway, we get to Orlando at 3:00pm. We fly home at 2:00pm on Sat. Nov 22 and get to OKC at 7:00pm. I am pretty happy about all those times.

I also got an email from MAW yesterday confirming flights and giving us more information ( most of which I already knew from this board!) It did say that our expense check is tentatively $1500! I know that WDW is expensive, but that seems like a lot of money to us! Maybe we are just used to being very frugal! We go to DL every year or so and we are always sharing meals. The boys always get Disney Dollars through the year from Santa, Easter Bunny, etc and end up with about $5 a day for snacks. I already figured out about what all of our ADR meals are going to cost and kind of "budgeted " out the rest of the meals-plus some for souvenirs. It is WAY more than we are used to. I told my husband that we are not going to be so frugal on this trip- if we see a snack we want to try, we're going to! HA- we might end up spending more than our expense check! We have quite a few Disney Reward Dollars from our Disney Visa ( even after taking out $500 for our upcoming DL trip!). We can only put $5000 a year for the family in our health care spending account- and we always go WAY over that. We put all of our medical expenses over $5000 on the Disney Visa and then pay it off every month with the insurance check! It really adds up fast ( especially this year because Sam nearly completely severed his foot in a trampoline accident- he had a ton of unexpected medical expenses!).

We have been reading a lot of trip reports about trips to GKTW- I had only skimmed through them before since we thought we were going on a cruise. Initially the boys thought that GKTW would be too little kiddish. But something about the free pizza, ice cream and candy at the movie theater has really excited them-lol. Teenage boys love free food-especially when they have grown up sharing everything! A couple of years ago, we went to an NICU reunion and they gave each of us a coupon for a free combo meal to Sonic. We went there for dinner one night in OKC and the boys automatically started coordinating sharing meals like we usually do when eating out ( hey do you want to share tator tots and a rootbeer, etc). It took a while for them to understand that they EACH got to pick out their own side item and drink-lol!

Well, Nathan-my early riser is up and ready for breakfast!

Carol
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 07-23-2008, 03:30 PM   #10
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Have a wonderful trip! Your four boys are all so handsome. And I love all their names. I have a Samuel of my own so I'm partial to that one of course.
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Old 07-23-2008, 05:25 PM   #11
oklamomof4boys
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Quote:
Originally Posted by daisylou View Post
Have a wonderful trip! Your four boys are all so handsome. And I love all their names. I have a Samuel of my own so I'm partial to that one of course.

Thank you! I love the name Jack and wanted to use it for our oldest. But my brother, John, had a baby due at the same time and wanted to name the baby John ( after him) and call him Jack. Still not sure why Jack is a nickname for John-lol! His wife had a very hard time getting pregnant and I got pregnant in 1 month so I thought it was fair to let him use the name even though Tucker was born 19 days earlier!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 08-31-2008, 07:39 PM   #12
oklamomof4boys
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More Good News

We were notified a couple of days ago that we have been chosen to be part of the Big Give ( I think I called that the right thing)

We are very excited and honored. I wasn't sure if I was allowed to announce it before we were verified by our wish coordinator. I love so much of the stuff I have seen posted. I just wish I had younger children or girls for some of the stuff- but I'm sure they will find something for my young men! I'm not worried!
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Nathan's magical wish trip- Pre trip report [/U]
http://www.disboards.com/showthread.php?t=1866940
WDW twice including Nathan's MAW trip to WDW
8 cruises and counting- almost Platinum!
Disneyland- over 14 times and counting
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Old 08-31-2008, 08:27 PM   #13
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Congrats on getting to be part of the BigGive! I'm excited to see what those DISboutiquers make for your boys. They are so creative!

I loved what you said about your boys. You're such a great mom! That's obvious. After my Madison was born (she's my first) and we were ready for #2, I truly wanted another girl because she'd been so much fun. But God said otherwise and I got Ty. I never dreamed boys could be so sweet to their mamas!! I love having both, but it really doesn't matter. Once they're here they are a part of your heart, no matter whether boy or girl. And I am willing to bet that you are going to be blessed with lots of grandaughters and some amazing daughters-in-law!

I'm glad Nathan is out of PE. I've known lots of coaches/PE teachers who push that way and it sounds like you've made a safe decision! His running away from that coach made me laugh!!
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Old 09-02-2008, 03:11 PM   #14
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Jumping in to follow your trip report. Your boys sound great, and so does your husband. I had a girl, who hates pink. So I still don't get to do bows or polish. We love them all just the same don't we!
I'm glad Nathan is out of PE. We have a new teacher this year too, so it was back to the nurse and principal to get my daughter out of the heat and strenuous "health test". She has an AVP that can lead to her passing out when she is out of breath or overheated. We love our cardiologist, but we have to drive almost three hours to get there for appts. So I understand!!!!!
Can't wait to hear more about your planning for WDW!
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Old 09-03-2008, 08:23 AM   #15
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I've only read the first post so far and had to comment. I am bawling like a baby. I can't imagine what your family has been through.

Okay, now I'm going to read the rest.

ETA: I just read everything and I love your family! You seem like such a wonderful mother. I got all sappy and teary again reading about how much you love your boys and how each of them communicate differently. It's so wonderful to hear from a mother who is so in tune with her kids!

We're so glad that your family is part of the Big Give!!
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