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Old 09-12-2012, 02:28 AM   #1
Earning My Ears
lakinbum93's Avatar
Join Date: Sep 2012
Location: Amarillo, TX
Posts: 30

Planning Kaston's Make-A-Wish to WDW Nov or Dec!!!

A little about why I am here with you...our 9 year old son, Kaston, received a visit from the Make-A-Wish volunteers a couple of weeks ago and his wish is to go to Disneyworld. So here we are, trying to figure it all out and plan what we can.


A little about us...my husband & I are high school sweethearts, started dating when we were 15 & 16 and have been together for 22 years (you do the math) and married for 15. We have a 13 yr old daughter, Korah, and a 9 yr old son, Kaston. He was born in November 2002 with complex Congenital Heart Defects (CHD), more specifically Tricuspid Atresia (TA) and Hypoplastic Right Heart Syndrome (HRHS). He's had 2 open-heart surgeries (the Glenn, age 6 mos. and the Fontan, age 22 mos.), 3 heart catheterizations (last one at age 4 to close his Fenestration), many weeks in the hospital, countless dr. visits, daily meds for his entire life, cardio visits at least every 6 mos., the usual stuff that heart kids go thru. He is currently being monitored by Holter monitor every 6 mos. because his heart rate has dropped quite a bit; his average running 50-60, dropping into the 20s at times. What does this mean? The scar tissue from the surgeries is intereferring with his natural pacemaker, therefore a mechanical pacemaker is in his future. Not sure when...could be after the next visit, could be years from now. It is a wait and see game, as most of his life has been. He has another cardio visit in Dallas (6 hrs from where we live) mid-October.


We also homeschool. We were brought into the world of homeschool because of a really bad 2nd grade year health wise and it was recommended by his principal to be on a homebound program for 6 weeks. We loved it, so we decided to do it full time! We are now into our 2nd year and still are loving, although the 13 yr old will disagree occassionally! Both kids are in karate, they do indoor rock climbing in the fall & winter and wakeboard during the summer. As a family, we love the outdoors, camping, spending time at the lake, hiking, and watching the beautiful West Texas sunsets. Oh, and I help run the local chapter of Mended Little Hearts!


So, here we are, about to embark on something very magical and I have no idea what I'm supposed to do! I am a planner by nature and I have SO. MANY. QUESTIONS! I hope you all can help me navigate this forum and plan what promises to be the best vacation we could possibly imagine for our son and our family! We are super duper excited needless to say!

He is most looking forward to seeing the Star Wars attractions, Disney Animal Kingdom and Sea World Aquatica. Since our kids are a little older, they aren't quite so much into all of the character dinners, although I think the ones at GKTW will be fun and sufficient. They are interested in trading pins (I need to know more about this), collecting smashed pennies and maybe getting character signatures, although they may be a bit too old? We are also trying to plan a day at a local wakeboard school called The Boarding School, ran by pro wakeboarder Shaun Murray. We have met him several times, emailed Kaston a few lines and gave him his riding jersey at a tournament when he was younger. I think MAW is trying to arrange this as well, but not for sure. Regardless, we will try to make a stop there during our visit. My husband and kids have never seen the ocean and for me it was only a quick day trip to Catalina Island in high school, so we would like to spend a day at the beach and Kaston wants to learn to surf.

We would like to fit in a schedule something like this, but am very unsure of it all. Of course, there's all the great activities that go on at GKTW that we would like to participate in also!
Day 1 Travel/GKTW village/stock kitchen
Day 2 Hollywood Studios / Epcot
Day 3 Air Tours / Sky Diving / Boggy Creek Boats
Day 4 Animal Kingdom / Magic Kingdom
Day 5 Kennedy Space Center / Atlantic Ocean
Day 6 Epcot / Magic Kingdom
Day 7 Shopping / Rest
Day 8 Universal Orlando
Day 9 Sea World / Aquatica
Day 10 Gulf of Mexico or Cocoa Beach?
Day 11 The Boarding School
Day 12 Travel

I know and fully realize this is a totally packed itinerary, but I tried to mix up the random activities with the theme park days somewhat. And I realize that we will not be able to see everything there is to see at every park, but am totally ok with that. I plan on figuring out exactly what Kaston wants to do at each park and go from there. Because our kids are a little older, I think there will be quite a bit of stuff we can skip.

To start off, my main concerns are:
#1 The dates we chose were the 1st or 2nd week in November or the 1st week in December. I am hoping these are good, low attendance times?
#2 We asked to extend the trip beyond what is normally provided (although I don't want to be greedy...it's just that my husband works shift work - 13 hr days, 4 on/4 off. So if he takes off 4, he gets 12 off! We should take advantage of that, right?) Is this normally frowned upon or is MAW accommodating to this type of request? Of course, we will cover any extra cost.
#3 Will I be able to make the flight reservations, or do they generally do that? I would like to utilize every moment and not have some funky flight times or unnecessary layovers
#4 It is my understanding that we will be staying at GKTW and that they provide passes to mulitple Central Florida attractions. Are we able to use those beyond our stay at GKTW since some of them are 2 week passes?
#5 Will it be too cold to do Aquatica, go wakeboarding or surf at the ocean?
#6 Is it OK to contact the Wish grantor and check the status?
#7 When do they generally do the send-off/reveal party? My husband has a crazy weird schedule, so this will need to be coordinated with his days off. And what is an appropriate number of people to invite...my son has already made his "list" and has over 40 families on there!
#8 I really, REALLY need to tie down some dates ASAP, as my parents want to be here for his party, but are trying to plan their winter pilgramage to Phoenix! How do I go about kindly asking for updates on the progress of tying down a date?

As far as the details of the trip...oh boy do I have questions, but am learning things as I go, so I won't bombard y'all with more just yet! Thanks for letting me share our story and am looking forward to "meeting" more heart families and MAW families here!



Last edited by lakinbum93; 09-12-2012 at 10:58 PM.
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