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

[lakinbum93]

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.

CURRENT PICTURE OF KASTON:

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.

SECOND OPEN-HEART SURGERY AT 22 MOS. OLD:

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!

ONE OF KASTON'S FAVORITE ACTIVITIES!

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!
Jamie

ONE OF MY FAVORITE PICS OF HIM

KASTON AND KORAH AT CHRISTMAS...

 

[Lilfoot93]

I am so glad to hear that Kaston will be receiving a wish! I am a fellow heart mom too. My son Trevor has pulmonary atresia. We haven't gone on our wish trip yet so I can't answer all your questions

As for extending your trip it depends on your chapter. I asked about it and ours said no. I would have extended if we had been able too.

Our chapter said we could ask for either a red eye flight or an early morning flight on the way to Orlando and we could request either an early morning or an evening flight on the way out and they would do the best they can to accommodate us. We are on the west coast so I am leaning toward a red eye. Our chapter sets up all the travel arrangements and we just show up! I am not sure how long beforehand they will give us flight info or dates. Trevor wants to be a Jedi during Star Wars Weekend so we have to wait for those dates to be published.

I don't think it would hurt to call and ask when they would have dates. Explain that your husband needs to know to take time off of work. I know we let our chapter know that the earlier we had dates the better so my husband can request the time off of work. But then again we will not hear anything until Jan or Feb when they release the dates for SWW.

We were told the send off party would be about 2 weeks before we leave. They will coordinate with us for the dates.

We are in the waiting game too. Trev needs a pulmonary valve and conduit (He currently does not have any). So each appointment is filled with anxiety... Surgery now or later.

Looking forward to hearing about your planning and your trip! I hope you get the dates you want and you here from them soon!

Jackie

 

[carebearkidney]

Welcome, welcome! Kaston is a cutie - oh wait, I'm not supposed to say that am I? He's HANDSOME and very MATURE looking. We just received our dates a couple of weeks ago and will be traveling in February - it coincides with a winter break the boys have, so that's why we planned that.
Have you ever been to Disney World before?

 

[aym4Him]

I have TOTALLY seen that pic of Kaston on his wakeboard before! Was it in a MLH newsletter?? He is so handsome!!

Oy. Scar tissue. So not our friend, either!

Love your itinerary! I hope your chapter lets you extend. It really depends. For instance, we want to extend but were told we would have no problem adding on to the beginning of our week but at the end is the week of Thanksgiving. They are iffy on that. I'm still not sure why b/c the flight prices (that WE looked at) were the same, but I'm sure they have their reasons.

I believe they will take care of the flight arrangements- which is hard to wait on b/c I'm used to booking as soon as I know my plans to save $$. My chapter is only just now booking October flights so we won't know if we can extend/flight times until she's done with them. I'm in the mindset that we are extending as I can just cancel things if we don't get to.

You are going to have SO much fun!! I am catching myself wishing we would have waited until E was older so he could really dictate what he wants and remember it better. I just let fear take over- what if something happens to one of us if we wait? I guess you guys know how that is. You are just cruising merrily along and then the fear that God will decide it's your child's time grips your heart like a vice. There's no reason I should fear from a health standpoint. His last check up was great. But, you know...

 

[alyssaswish]

Welcome! We are going on my daughter's MAW trip the second week in November. Our MAW chapter did allow us to extend our trip, so we will be moving to Carribean Beach Resort after our time is up at GKTW. You will receive 3 day park hopper passes to Disney, 2 day passes to Universal, and 1 day pass to SeaWorld. All of the tickets are good for 2 weeks before they expire. You can use them after you leave GKTW. GKTW also has passes for LegoLand, Bush Gardens, Gatorland, Air Tours, Boggy Creek Boats, etc but you can only get these tickets for the days you will be at GKTW.

I have emailed our MAW coordinator a couple of times about questions. They are booking our flights, but I requested an early flight to Disney and a late flight back home if at all possible.

Happy Planning!

 

[lakinbum93]

Yes, some of you may have seen a couple of these pics if you're familiar with MLH (if not, you have GOT to! check out www.mendedlittlehearts.org) The one of him wakeboarding was on the national Mended Little Hearts website for a while and he's on the marquee? (the scrolling of the pictures) now on the main page. Just awesome! I just emailed them the pics when they sent a request out for pics for the new site and sure enough, they've used BOTH of them! Too funny!

Thanks for all the insight and answers to my questions! It's always great to meet other heart moms out there! Looking forward to traveling this MAW thing with you all! Maybe we will be able to meet each other during our stays (if we ever figure out our date!)
Jamie

 

[Moodyzblu]

Hi ! Another heart mom here.

We were able to extend our trip by 5 days .. which we took full advantage of. Some chapters don't allow .. hopefully yours does !

They booked our flights for us. We had an 8 am flight out and a 9 pm (which got delayed by 1 1/2 hours back home) I would have rather had an earlier flight back home.

The weather that time a year is tricky. We've been there and it was 75 one day and 45 the next .. so it just depends !

We didn't get a send off party .. the granters just came to our house and gave us a cake and our stuff .. then one of them met us at the airport to see us off .. but that was about it. So I guess thats a chapter to chapter thing as well.

Can't wait to hear about your plans .. they look and sound amazing !!

 

[maroo]

I made some comments below in PINK.

Have a BLAST!! We are so glad you are here!

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?
November 8th starts "Jersey Week" when the schools in New Jersey get a week off - and the parks are busy! It is also the Wine and Dine half marathon weekend, which will bring in some crowds, too. Otherwise those weeks are great! And you will have the wish stuff and won't really wait in many lines.

#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. This is done a LOT! And will really make your trip so much more enjoyable! Lots of rest days to enjoy GKTW!


#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 MAW usually takes care of the flights - but they do everything they can (using the flyer miles, usually) to make it a smooth flight for you!


#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?

YES! You get 3 days at Disney, 2 at Universal and 1 at Sea World - and they also have tickets to a lot of other attractions, too - if you have time for them! Gatorland, etc...

#5 Will it be too cold to do Aquatica, go wakeboarding or surf at the ocean? Totally depends on the weather...and how cold can he get?


#6 Is it OK to contact the Wish grantor and check the status?
Yes!

#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!
Our chapter doesn't do a reveal party - so check with your chapter on this. They use the money for a special ticket or something for the wish child.


#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? I think just kindly ask! Let them know why you need to know - and I am sure they will understand!

 

[lakinbum93]

Thanks everyone for all the advice! I messaged the wish grantor and she said they are still waiting for the paperwork back from his cardiologist. So I called his office, was transferred to social work and left a message. Still no word! This is driving me CrAzY! I feel like since everything's dragging, that we will not get our requested dates.

I have just had to stop thinking about it and talking about it with the kids and carry on until there is something to get excited about!

And it's great to see all the heart moms on here too! We are sort of veterans in the CHD world, at the ripe old age of almost 10...and I also help run our local chapter of Mended Little Hearts in Amarillo, TX, so I consider myself pretty resourceful if anyone has questions with CHD related issues. Please feel free to message me any time and if I don't know, I bet I know someone who does!

Heart hugs and blessings to you all!
Jamie

 

[Lilfoot93]

I hope you guys get an answer soon so you can get your requested dates! Waiting is the hardest part! Trev wants to do Star Wars Weekend so we will not get dates until the dates for Star Wars Weekend is posted, which probably won't happen until after the first of the year!

Jackie

 

[lakinbum93]

So, apparently Kaston's cardiologist is out of the country doing mission work in some 3rd world country! He won't be back until the end of next week...so we still wait for the paperwork to go through!

Talked to MAW to see if we could just get the pediatrician to approve it, but they prefer the specialist...which is understandable. I also asked about extending out trip a few days and she said it depends on the cost difference because some days are cheaper than others to fly. She said that lots of families have done that within our chapter but she personally has never done it. SO...I guess once we get the approval, then we can hammer out the actual dates and flights. She mentioned maybe them paying for the flight there and us paying for the flight back. Not sure about that though. Seems like it would be super expensive on top of extending. I just told her that my husband will have 12 days off regardless if we are in FL or at home, so we would rather spend them there! She also looked at GKTW and the dates we requested are pretty available and not many reservations have been made, so she feels we will be able to get whatever dates we want. And that they provide 6 nights, 7 days at GKTW.

So, we will just wait a couple more weeks. She said once they get the paperwork she will book it very quickly, so we should hopefully know something very soon!

 

[15isto2]

Hope you guys have a brilliant trip

 

[LindaBabe]

Looks like you have already got a ton of useful advice! My fingers are crossed for you to be able to extend.

 

[lakinbum93]

We found out Fri, Oct 5th that Kaston's cardiologist actually DID fill out the paperwork BEFORE he went on his mission trip but apparently it was never sent to the MAW office, and now it's lost! So MAW had to send MORE paperwork and his cardiologist will not be back into the office until Oct 15th. So they still can't book anything and GKTW is completely booked up for October and the first opening isn't until Nov 23, the day after Thanksgiving. So, now we are looking at, hopefully November 26th, if it doesn't fill up before next week.

Good news is I talked to MAW and it looks like they will extend our trip! YAY! The flights are all within a couple of dollars of each other for different days, so she said that shouldn't be a problem...but still need definite confirmation.

Also, wanted to pick y'alls brains about doing a MAW Send-off/Birthday Party. Our chapter is given a small budget for a send-off/reveal/welcome home party. Kaston's 10th birthday is actually on Thanksgiving this year, Nov 22. He really really wants a surprise birthday party (which wouldn't really be a surprise, but I think I can pull it off & just tell him we aren't doing a party because of the Disney trip and that is his birthday present/party.) So what my husband & I were thinking is that before Thanksgiving, we could have a huge birthday celebration, along with MAW being there. What better birthday gift could a child have, right?! Has anyone planned something like this?

Also, we found out today that Kaston has to have another 24 hr Holter monitor done BEFORE we go to Dallas on the 19th for a cardio check-up. His heart rate (as mentioned in my first post) has slowed down a considerable amount because of scar tissue, and the last couple of weeks he's been having some weird episodes, where his heart rate jumps up to over 100 and makes him nauseated. And then like 5 minutes later it's back down into the 60's. All while he's just sitting down eating breakfast or watching TV. I mentioned this to the clinic nurse when we were discussing MAW paperwork and she freaked out and wanted me to take him to the ER! I finally convinced her that that wasn't really necessary, that it was just an episode, and she decided to speak to his cardiologist about it. So today, they called and he wants him to have a Holter done before we head down to Dallas (we are 6 hours from Dallas).

With that, I am hoping that he doesn't have to have a pacemaker before we go to Disney, but also know I will be worried about him riding rides too if he is having funky rhythms and it triggers a really bad arrythmia. Ugghh! I hate this!

Well, regardless, I know that everything is in God's perfect timing and realize that "it is what it is". He will provide us with the perfect possible date for this once in a lifetime opportunity and just have to let go and let God.

 

[aym4Him]

Oh man!! That sounds like some Durham luck!! I really hate that you're going to have to push out your dates!

I really hope that the monitor doesn't show anything too abnormal that can't wait til y'all get back. I know it has to be hard waiting and wondering. I will pray God's peace over your family!!!

Do y'all see someone out of Children's? We go to Medical City. Just curious!

I don't have much input on the party idea but I think what you are thinking of sounds really fun!!!!

 

[lakinbum93]

Do y'all see someone out of Children's? We go to Medical City. Just curious!

Yes, we see Dr. Zellers at Children's Dallas. I know of a couple of people that have gone to Medical City as well.

Thanks for the well wishes and encouragement!

 

[Lilfoot93]

Sorry to hear that the paperwork got lost and now you have to go later than planned. Great news though that you can extend!

Praying the holter monitor doesn't show anything abnormal on it. Trev has yet to have one. So I will be curious to see how he handles it!

Hopefully you can get the dates for the end of November.

Jackie

 

[lakinbum93]

A lady from MAW called Friday and said she wanted to go ahead and book our dates at GKTW!!!! Since they knew the cardiologist already agreed on the wish and they will have the paperwork this week, she wanted to get us booked so our dates don't get booked up!

So, we will be at GKTW Monday Nov 26-Sun Dec 2nd and then extend to Fri Dec 7th! I am so excited! I feel like I can really start planning now and really get the kids involved. My husband is having a hard time accepting that it is actually official! He is of the mentality you gotta see it to believe it and we don't have the concrete evidence in our hands, so he has a hard time planning anything. But I'm goin' with it!

I am going to do the chain link project like so many of you have done, with a small gift every 5 days. I am also having Mickey Mouse cake balls done up with our date on it. I will post pictures when it's done!

And then there's the birthday/reveal party I've got to plan! Sheesh...it's 43 days away, but I know it will be here before we know it. And I want to make sure I cherish each exciting moment I can!

Also, Kaston had his Holter done Friday. We won't know the results until we get to Dallas the 19th. And, of course, he didn't have any unusual episodes while he was on it. Not surprising. That's how it always works, right?!

This is gonna be great!

 

[15isto2]

Wonderfull news that you have your dates confirmed

 

[lakinbum93]

Got a message from our Wish Grantor today and everything is confirmed for Kaston's MAW!!!!! We will be staying at GKTW Nov 26-Dec 2 and then extending to Dec 7. I'm a little bummed though because our flight doesn't even get into Orlando until 9:30 pm so we will miss the Halloween night at GKTW and it's going to make for a really late night. And then our flight home is early in the morning, so we really are losing an entire day. BUT, I really can't complain and have realized that I can't be in control of EVERYTHING!!! Right?! I am learning through this process that I seem to have some control issues apparently!

Also, we are going to have his 10th surprise birthday/MAW reveal party on the 17th! It's going to be SO AMAZING!! I just can't wait! Lots of planning to do for the party and for the trip...I simply LOVE the anticipation of it all. The kids started their countdown chain and I can't wait to give them their first gift! Here's what we did for them to announce the date:

Looking forward to sharing more with everyone! Please keep us in your prayers as we head to
Dallas on Thursday for a cardiology check-up. Praying for NO PACEMAKER!!!! We want to delay it as long as possible!

And please keep little Audree in your prayers too...she is 1, has been on the transplant list for almost a year and got her new heart 2 days ago! So far, so good...just trying to balance all the meds out right now. Can't wait to visit the family when we go. They are from our city as well and have been living apart for almost a year. Dallas is 6 hours from where we live! So it's been super hard on their young family.

Blessings!
Jamie