Make-A-Wish Young Padawan Wizard Oct-Nov 2015

[HyperPippi]

My 10 year old HLHS son will be going on his wish trip to WDW at the end of October into November. Then we'll be extending until 11/6. We're a family of six (he's the oldest) and staying at Give Kids the World. He's a huge fan of Star Wars and Harry Potter. His interests are a little older, but he's got three younger brothers. At the time of the trip, they'll be 8, 6, and 3.

His last two wish requests fell through - Make-a-wish couldn't do them. He wanted to be an extra in Star Wars 7. He was one of seven kids with that wish and Disney denied that one after he waited for 5 months. Then he wanted to go to the world premiere of Star Wars 7, but that got nixed 5 months later too since he's below the age for a PG-13 movie

He'd tried to do Disney before, but Cardiology had said he couldn't do any of the "no heart defects" rides. After a bunch of research and appealing to his cardiologist, they have agreed to let him go on up to moderate (50mph) coasters and no seriously strong centripetal rides either. So he's getting his WDW wish now, and he wants to do all he can.

His issues are complex, but workable. His heart is very stable with Oxygen levels around 94% of normal. But he lost his hearing after his fourth heart surgery before age 3, so he's deaf with a cochlear implant. That complicates any water rides since he need to take that off. It can get a little wet, but soaked is not ok. He's also g-tube dependent since age 2 but can eat things if he wants to. He simply doesn't have any appetite at all. And he's got a pretty severe milk allergy. His next two brothers and I also have the milk allergy (not as bad), but they have tree nuts too. DS2 also has peanuts and shellfish allergies and is gluten free. (Celiac runs in the family.) DS2 also has Auditory Processing Disorder (CAPD/APD). The older three boys are also ADHD (it runs in the family... through me).

I've been trying to plan, but his health issues have led me to be a pretty compulsive planner. Any previous trips have had four page packing lists. (I was so glad I brought the spare g-button the time it got yanked out when he was wrestling with a brother in the hotel room a couple years back!) The allergies have me so worried about how to handle eating at the parks. I've found some sites, but it doesn't seem to matter since I can't get any reservations. The sit-down restaurants at disney are apparently the ones best equipped to handle our dietary needs, but we're less than 180 days out and everything is booked. I've managed to book one restaurant - Teppan Edo for the afternoon of the second day. Danny (wish child) has never seen Hibachi because of DS2's shellfish allergy and he's thrilled at the idea. It's a 4 pm reservation, but it's all I could get. I can't get anything for the other days at the parks.

His special request for the wish is to go to Mickey's Not So Scary Halloween party. Does anyone know if Star Wars villains show up there? He wanted to do Jedi Training too, but they couldn't do both. His next two brothers are also huge Star Wars fans with him, so we'd have to get to the parks early to get them in with him anyway. He also loves loves loves Harry Potter. His 9th birthday was HP themed. He couldn't go during Star Wars weekends because he gets sick and throws up when it's above 85 degrees or so.

We're also trying to coordinate with extended family to join us for maybe some of the actual wish dates and the extended dates. None of us - and I mean my husband's entire family and mine (except my older brother) have EVER been to Orlando. (My older brother was lucky enough to go when he was 7.) So this is a very new thing for all of us. We're flying from Chicago for the wish trip, but they'd have to drive from the Chicago area.

Does anyone have any thoughts on how to make his trip special for Star Wars or HP?

Thanks!

 

[mamaVonna]

My 10 year old HLHS son will be going on his wish trip to WDW at the end of October into November. Then we'll be extending until 11/6. We're a family of six (he's the oldest) and staying at Give Kids the World. He's a huge fan of Star Wars and Harry Potter. His interests are a little older, but he's got three younger brothers. At the time of the trip, they'll be 8, 6, and 3.

His last two wish requests fell through - Make-a-wish couldn't do them. He wanted to be an extra in Star Wars 7. He was one of seven kids with that wish and Disney denied that one after he waited for 5 months. Then he wanted to go to the world premiere of Star Wars 7, but that got nixed 5 months later too since he's below the age for a PG-13 movie

He'd tried to do Disney before, but Cardiology had said he couldn't do any of the "no heart defects" rides. After a bunch of research and appealing to his cardiologist, they have agreed to let him go on up to moderate (50mph) coasters and no seriously strong centripetal rides either. So he's getting his WDW wish now, and he wants to do all he can.

His issues are complex, but workable. His heart is very stable with Oxygen levels around 94% of normal. But he lost his hearing after his fourth heart surgery before age 3, so he's deaf with a cochlear implant. That complicates any water rides since he need to take that off. It can get a little wet, but soaked is not ok. He's also g-tube dependent since age 2 but can eat things if he wants to. He simply doesn't have any appetite at all. And he's got a pretty severe milk allergy. His next two brothers and I also have the milk allergy (not as bad), but they have tree nuts too. DS2 also has peanuts and shellfish allergies and is gluten free. (Celiac runs in the family.) DS2 also has Auditory Processing Disorder (CAPD/APD). The older three boys are also ADHD (it runs in the family... through me).

I've been trying to plan, but his health issues have led me to be a pretty compulsive planner. Any previous trips have had four page packing lists. (I was so glad I brought the spare g-button the time it got yanked out when he was wrestling with a brother in the hotel room a couple years back!) The allergies have me so worried about how to handle eating at the parks. I've found some sites, but it doesn't seem to matter since I can't get any reservations. The sit-down restaurants at disney are apparently the ones best equipped to handle our dietary needs, but we're less than 180 days out and everything is booked. I've managed to book one restaurant - Teppan Edo for the afternoon of the second day. Danny (wish child) has never seen Hibachi because of DS2's shellfish allergy and he's thrilled at the idea. It's a 4 pm reservation, but it's all I could get. I can't get anything for the other days at the parks.

His special request for the wish is to go to Mickey's Not So Scary Halloween party. Does anyone know if Star Wars villains show up there? He wanted to do Jedi Training too, but they couldn't do both. His next two brothers are also huge Star Wars fans with him, so we'd have to get to the parks early to get them in with him anyway. He also loves loves loves Harry Potter. His 9th birthday was HP themed. He couldn't go during Star Wars weekends because he gets sick and throws up when it's above 85 degrees or so.

We're also trying to coordinate with extended family to join us for maybe some of the actual wish dates and the extended dates. None of us - and I mean my husband's entire family and mine (except my older brother) have EVER been to Orlando. (My older brother was lucky enough to go when he was 7.) So this is a very new thing for all of us. We're flying from Chicago for the wish trip, but they'd have to drive from the Chicago area.

Does anyone have any thoughts on how to make his trip special for Star Wars or HP?

Thanks!

, just wanted to say Hi! I only have experience with tube feeds; as far as the allergies I can only offer some info based on my insane amount of "research" for our upcoming trip. WDW is supposed to be excellent when working with people with severe allergies. When you book an ADR online, be sure to click on the link so you can check off all the restrictions AND when you are seated tell them about your needs-they will send the chef or manager out to handle it all.
Also check out kenny the pirate (website). There's a wealth of info there to help with planning.

I hope you guys have a wonderful trip!

 

[jojuvanlaanen]

Hello! Just wanted to say that we may be there the same time as you, if we get the dates we want. We want to leave somewhere between 10/21-and 10/24. We are extending also until the 4th I think. When you extend, will you stay in Orlando? We are in Wisconsin and we used to be in the Kenosha area and we have driven down many times through Chicago. I enjoy the drive actually. Tennessee is so pretty!

 

[HyperPippi]

MamaVonna, Thanks! I'd never heard of Kenny the pirate before!

Jojuvanlaanen, We're heading out the 27th and returning the 6th. We're still trying to decide where to stay. With extended family, it's probably cheapest to rent a house in Kissimmee. That's what we're looking at now.

I hope you both have great trips too!

 

[HyperPippi]

I just found out that the WDW railroad will be closed during our time there. That's going to be a bummer. The younger brothers would really have enjoyed that. (Not to mention it would have helped DS1 get around when he gets tired.) I hope they don't announce any more surprise closings during our trip!

 

[HyperPippi]

The boys are going to be so disappointed....
I just heard from Make-a-wish:

Just heard back from our Florida chapter. Samantha learned from our Disney contact that the Jedi Training Academy is going under refurbishment from October 4 through December 1 with no alternative options during that time. I’m so sorry for any inconvenience this might cause!

 

[jefmelmil]

Just wanted to say HI! I am new to this board. It sounds like we have a lot in common and look forward to hearing how your trip went when you return. We are a family of 9. Our 13 year old daughter is getting her wish granted to go to Disney World in April. She has numerous GI issues which includes a G-Tube, a chromosome deletion, seizure disorder and she has to be dairy free. We have a Type 1 diabetic child, an autistic son who has auditory processing disorder and developmental delay, and another child has to eat Gluten Free. To say the least I am nervous about all these issues and excited for our daughter at the same time. We are extremely thankful because we would never get to go on a trip like this without Make-A-Wish. Our daughter's illness is getting worse and she has been given only 3-5 years to live. So this will be a great opportunity for our entire family to have a fun trip with her. I have learned that we will be staying at Give Kids The World and they offer 2 days at Universal Studios. Have you asked if you could get tickets to Universal Studios? If you could get this maybe it would ease the sadness from lack of Star Wars. Like you, I have been trying to plan but Make-A-Wish has been pretty quiet. I am a compulsive planner because of our large family and all our issues. Please let me know if I can help at all. I have quite a bit of information stored on a Pinterest board and in an Evernote app.