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-   -   Nathan's Magical Wish Trip- Pre-trip report (http://www.disboards.com/showthread.php?t=1866940)

oklamomof4boys 06-25-2008 09:03 AM

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!

mistymouse5001 06-25-2008 09:23 AM

:hug: subscribing! Been through alot with this kid huh?!! What an emotional roller coaster.

Princesskeyblade 06-25-2008 12:51 PM

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. :goodvibes And keeping my fingers crossed for March.

Iluvmickeymouse! 06-25-2008 01:55 PM

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!! popcorn::

oklamomof4boys 06-25-2008 04:16 PM

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!

http://i204.photobucket.com/albums/b...006/7ac7-1.jpg

oklamomof4boys 06-25-2008 04:53 PM

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

http://i204.photobucket.com/albums/b...006/5b46-1.jpg

oklamomof4boys 06-25-2008 04:56 PM

All the boys
 
Here is a picture of all my precious boys getting ready for our first Disney Cruise!

http://i204.photobucket.com/albums/b...DSCF1743-1.jpg

cinderellakh20 06-25-2008 05:09 PM

What a gorgeous family - and what a miracle Nathan is!!! :goodvibes I hope you get news very soon on your magical trip - I'm sure it will be wonderful whenever and wherever :cool1:

HeatherN 06-28-2008 02:05 PM

Oh boy, a fellow make a wish family! So happy for you all. Your boys are all so handsome!

Iluvmickeymouse! 06-28-2008 08:50 PM

I love the pics!! What a handsome group! :goodvibes

Bill_Lin 06-30-2008 01:34 PM

Mission Space
 
Carol,

Did I remember to tell you to have Nathan stear CLEAR of the intense version of Mission Space at Epcot. The G forces bothered my heart, which was supposed to be fully healed. DW and DD did the less intense version and were fine and had a great time.
:surfweb:

Bill

oklamomof4boys 06-30-2008 03:24 PM

Thanks for the warning, Bill. When it gets closer to the trip, I will be asking people their opinions on the intensity of some rides. We bought an Unofficial Guide to WDW, but there are different kinds of intensity and I think it is helpful to hear from other people. We are familiar with rides at DL, so people can guage them to those. For instance, he is fine with BIg Thunder, but no way we would have him ride California Screamin'. And for some reason Matterhorn makes him " feel funny" so he skips that also.

Bill_Lin 06-30-2008 05:18 PM

Centrifugal Force
 
The problem I had with my heart was related to the Centrifugal force in the Mission Space Centrifuge version. Perhaps rides with a lot of intense centrifugal curves bother him. Thunder Mt. does not have much of that, more up and down.

Bill_Lin 07-15-2008 10:17 PM

Where did you go?
 
Hey,

Long time no see. :confused3 Can you post again?

Bill

oklamomof4boys 07-16-2008 12:46 AM

Well, plans have changed. MAW called and the only Disney Cruise they would do was a 3 night cruise and they would not allow us to extend the trip on our own dollar. So Nathan decided he would rather have the longer WDW/GKTW trip. Now we are trying to figure out when to do it. She also told me it couldn't be spring break ( our first choice of dates) or around any school break or holiday- except summer. Summer in Florida is way too hot for Nathan. In fact, researching it a little more, spring break might have been too hot ( he has trouble regulating his body temperature). Now we are trying to figure out the week of November or January that my older boys will have the least conflict with. I know their teachers will have no problem with them missing for a MAW trip, but they are in many activities that are important to them ( honor bands and academic teams) and I want to avoid conflicts as much as possible. I will also have to miss a week of work ( I am a contract speech pathologist to several small schools- I know they will be fine with me taking off, but since I am essentially self employed- no work, no pay. Oh well, we were going to extend the trip on our own if we had taken a cruise, so I guess now we will save that money).

This is all so overwhelming to me- I am an over planner and now I have much more to plan. Of course it didn't help that MAW called me on my cell phone when we were on our way to Houston ( 8 hours away) to take Nathan to his cardiologist. Cardiologist visits are stressful enough on their own.

Speaking of the cardiologist- it was a very long day. At the clinic at 9:00am, done with everything by 3:00pm and then an 8-9 hour drive home. We just got home ( at midnight) and I am too wound up to sleep. His appointment went fairly well- his heart function and size were essentially the same ( maybe a slight tinge better, but certainly no worse, which is the concern). He did show some irregular heart beats during his stress test so he has a 24 hour monitor to see if they are benign or some kind of arrhythmia that needs to be addressed. Hopefully it is nothing. We leave for Disneyland in a little over 2 weeks.


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