Getting his Wish, James is Going to WDW- GKTW March 16, 2010

[Wee Annie]

James gets his g-tube next Friday...we have to go to Anchorage and I guess he'll have to spend two nights in the hospital, but he usually is in for at least two weeks, so two nights is nothing! I'm a little nervous about the g-tube, we're "use" to the NG, and I don't know th equirks of the g-tube. James is also on a slow continuos feed, he has low volume tolerance, and to give him all his cals it takes about 20 hours. Can I ask two questions? 1. Do you think he'll be feeling pretty yuck from the surgery still after two weeks? 2. Was your daughter able to move feeds faster with the g-tube?

Amber,

I was nervous about the g-tube -- it's hard to change to something when you've all gotten used to something else. But, truly, once you all get used to it, James will be so much more comfortable without a tube in his nose going down his throat! That sensation will be gone, and also, fairly importantly to him, I would think, is the fact that his tube will be much more concealed. As for healing from surgery, it was truly nothing for my daughter. She was in the hospital overnight for observation, as she had a really weak immune system when this was done (it's still not "normal"), and she really didn't have any problems with it. I think she just so appreciated getting the tube out of her nose (and she was only 2 at the time)! I do know that, for the first couple of months while the site healed, she had to have a length of tubing attached at all times, which can be a pain. After two months they were able to change it to a small "button" where we just attach a tube for feeds or meds when needed -- much easier. But even with that length of tubing attached in the beginning it was still, once we got used to it, so much better than the NG tube.

As for the speed of feeds, that took a while for my daughter. I don't think the change in feeding mechanisms really enabled us to speed up her feeds. Her GI system was such a mess at the time, she could only tolerate 10 cc an hour of an elemental feed at times (and sometimes none, just tpn). I'm hoping and praying for the best for James, but be prepared that you may have to just run his feeds at the same, slow pace for a while. Eventually we were able to speed my daughter's feeds up, but it took a while.

After he gets his g-tube, if you have questions/need any tips on care (quality of life things that you may not want to bother the dr with), feel free to ask them here. For instance, I don't know if James is going to be on a continuous feed throughout the day for a while, but if you find there are times when he is off, you will probably have a coil of tubing to deal with. Our GI dr just recommended taping it to my daughter's abdomen so it didn't get pulled, etc, but that was not a comfortable option. We ended up using stretchy bands of gauze to hold the tubing against her abdomen instead of tape. It was recommended to us by a family friend, who said they use it on burn victims to hold bandages in place. It was truly helpful. We also have a cream that's really helpful for irritation around the stoma.

So see what kind of tubing etc. you are dealing with, and feel free to ask questions of any kind (especially those "quality of life" ones the drs often overlook). I hope James will be able to recover as well from the surgery as my daughter did (she has leukemia, and is immuno-compromised from her chemo treatments, so is not comparable physically to your son, but perhaps can be used as example of how someone with a weakened immune system can recover from this procedure).

Ann

 

[Wee Annie]

Tonight has been a rough night for James. He wasn't able to go to school yesterday, (he only goes half days now) and he is in a lot of pain tonight. We tried all the pain meds, but nothing is working. I brought James the laptop to look at pictures of GKTW and WDW to get his mind off the pain. He may post on here tonight of he feels up to it.

So sorry to hear James is in pain. Hoping and praying for a better day for him tomorrow.

 

[Momofwishkid]

Tonight has been a rough night for James. He wasn't able to go to school yesterday, (he only goes half days now) and he is in a lot of pain tonight. We tried all the pain meds, but nothing is working. I brought James the laptop to look at pictures of GKTW and WDW to get his mind off the pain. He may post on here tonight of he feels up to it.

Im so sorry James is having a rough day and am hoping today is better for him.

 

[snowwhitesmom]

Tonight has been a rough night for James. He wasn't able to go to school yesterday, (he only goes half days now) and he is in a lot of pain tonight. We tried all the pain meds, but nothing is working. I brought James the laptop to look at pictures of GKTW and WDW to get his mind off the pain. He may post on here tonight of he feels up to it.

Hope and hugs from here..... here's a fun link that James might like to look at -http://allears.net/tp/ak/ak_mjt.htm - we love Animal Kingdom and I noticed you are there on your first park day -
hang in there - there are lots of good thoughts coming your way from everyone here, I can tell!

 

[alaskanabbott]

hi im james and I can not wet to go to disney land. I like the movie Lord of the Rings, I like playing with my brother we play playmobil. I like Egypt stuff. The best thing about the trip is the adventure I want to do all of the stuff there. I cant think of anything else.
james

 

[snowwhitesmom]

hi im james and I can not wet to go to disney land. I like the movie Lord of the Rings, I like playing with my brother we play playmobil. I like Egypt stuff. The best thing about the trip is the adventure I want to do all of the stuff there. I cant think of anything else.
james

Hi James!
I like Lord of the Rings too - when I was about your age, my Dad - who was a teacher - gave me all the books - he loved them too! He loved them so much that he used them as a read aloud for his classes. I would read them to my students, but they are young enough that the Lord of the Rings is too long for them. I do read The Lion, the Witch and the Wardrobe to them though - they love that!
I am also into Egyptian stuff - when I was in seventh grade, I did a report on Egypts and mummies - I think it was the only time I liked homework!
But even more than Egypt and Lord of the Rings or Narnia, I LOVE DISNEY! If you have any questions about anything, ask away and I will do my best to answer. I am sending Mom a picture of my two children - I have two girls - so maybe you could ask her to show you!
I am thinking of you and your wonderful family and I am so excited about your trip to Disney!
Michelle

 

[Wee Annie]

hi im james and I can not wet to go to disney land. I like the movie Lord of the Rings, I like playing with my brother we play playmobil. I like Egypt stuff. The best thing about the trip is the adventure I want to do all of the stuff there. I cant think of anything else.
james

Hi James! My family is going to Give Kids the World in April-- you'll have to let us know everything you enjoy when you're down there!

LOVE Lord of the Rings. And I always liked Egyptian stuff -- mummies and archeology and all. So does my middle daughter, Maggie.

You're going to have a great time at WDW!! Feel free to ask any questions you might have here -- usually someone has an answer.

 

[alaskanabbott]

Hi, this is Macylea, I am James' twin sister. I will be typing for him.

Where do you think is the best place to go, in DisneyWorld?
What type of fun activities are there? I mean, are there scary,
exciting, fun things to do? i really like all sorts of rides, as long as they are not bumpy! Bye!!

 

[Momofwishkid]

Hi James, I cant answer any of your questions yet as we have never been to Disney but are going in just over a week so we'll let you know when we get back. Hope your feeling better today.

 

[snowwhitesmom]

Hi, this is Macylea, I am James' twin sister. I will be typing for him.

Where do you think is the best place to go, in DisneyWorld?
What type of fun activities are there? I mean, are there scary,
exciting, fun things to do? i really like all sorts of rides, as long as they are not bumpy! Bye!!

Hi Macylea! Hi James! Aren't you sweet Macylea, to type for your brother. Wish I could get someone to type for me - I am such a slow typist!
There are four parks in Disneyworld - Animal Kingdom, Hollywood Studios, Epcot and Magic Kingdom. My favorite ride in all of DisneyWorld is at Epcot. It is called Soarin', and it made me feel like I was a bird, flying over things! It is a nice smooth ride - I love it. Magic Kingdom has the Haunted Mansion, another fun ride that is a bit scary, but not bumpy. Animal Kingdom has so many animals to see - and Hollywood Studios has Toy Story Mania which makes you feel like you are in a video game! My favorite thing to do of all is just to look around - it is so pretty and happy and fun - I LOVE it! And when I enter Main Street in Magic Kingdom, all I can smell is cotton candy and cookies - yum!The Great Movie Ride in Hollywood Studios is fun too. My teenagers and my husband like Rockin Roller Coaster, but it is so bumpy fast and jerky I can't do it - it hurts my neck and makes me sick to my stomach - so see? I don't like bumpy rides either.
I have a question for you two and your brothers and sister and Mom and Dad - will you take a survey for me? I am wondering what everyone's favorite Disney character is. Almost midnight here and I have school tomorrow so off I go - good night!

 

[alaskanabbott]

Thanks for writting us back. What two parks can you do in a day? James' is feeling about the same tonight, but we're having fun playing on this board. Our favorite characters are.

Dad- Micky Mouse

Mom- TinkerBell

Dakota- Eyore

Caelan- Aladdian

James- Phineus and Ferb

Macylea- Tigger

Elijah- Timon

Mackenzie- Ariel

Is there a fun place to eat that a boy would like, not like Cinderella's castle? Thanks, we appreciate all of this. Ok by I have to go to bed now, but I will ask mom to type more tomorrow for me after physical therpy.

 

[pipersmom]

Hi James!
We're getting ready to go in about a week as well! The last time I went to WDW was when I was about your age and I remember loving Space Mountain, Splash Mountain and Big Thunder Mountain..that one is bumpy though! We're splitting a day between Animal Kingdom and Hollywood Studios, so I'll let you know how that works out. Piper is only 8 though, so what she would like and what you'll like might be a lot different! I'm not sure about a character meal at MK, I think the only ones there are Cinderella's Table and Crystal Palace! Crystal Palace is Pooh and friends. You guys should maybe check out Hoop-Dee-Doo Review, I think it's supposed to be more friendly for all ages and is more of a dinner show than an actual character meal. There's also a character meal at Universal Studios with folks like the X-Men, Spongebob, etc that may be more up your alley! Just some things for you guys to think about

 

[alaskanabbott]

Hi James! .....

Hi James....

Hi Macylea! Hi James!... QUOTE]

Hi James!.....

OH Thank-you all so much, James is in bed with a big smile! Since he got sick, unfortunately he has distanced himself from just about all his friends...more them than him...not in a mean way, but he can't do much. His little brother Elijah is very social and has friends over all the time, so James "borrows" his friends. Now James is very excited, because he has some new "friends" and he made me write down your names- not sure why, since his vision is so off he can't read but he has your names on his night stand, just in case.

And it gives Macylea a new way to help her brother, and makes her feel like she's doing something, always good for a twin.
Thanks again everyone!

 

[yinyanggirls]

I was just reading that Universal has a character meal restaurant. Might have some superheroes?

 

[alaskanabbott]

I was just reading that Universal has a character meal restaurant. Might have some superheroes?

I'm going to look there right now. James is in bed, and I didn't know he wanted to do the character meal so bad, huh...His little sister is trying to convince him that Cinderella isn't just for girls, so we had to remind her that this is James wish trip. I think super hero's would be right up his ally.

 

[yinyanggirls]

There is one at Disney that has Alice and ??? someone help me here, is the Mad Hatter? Or there is the Pirate adventure thing they do on a boat, I seem to remember it was not too pricey.

 

[alaskanabbott]

There is one at Disney that has Alice and ??? someone help me here, is the Mad Hatter? Or there is the Pirate adventure thing they do on a boat, I seem to remember it was not too pricey.

Ok the pirate thing on the boat is very James! He had a Jack Sparrow look alike come visit him in the hospital on Christmas morning and was in heaven...is that at WDW? Anyone with info on that let me know!!!

 

[pipersmom]

The Pirate cruise is WDW, but I think you catch the boat at one of the WDW resorts. One TheCapells TR's has his son going on it, if I remember correctly, I'll find out and let you know!

 

[Nettaboo]

Hi James!! So glad you were feeling good enough to visit the site!!I know you will enjoy Disney World!!!

 

[pacrosby]

The Pirates Adventure Cruise (or whatever it's called) goes out from 4 different resorts, the Grand Floridian, the Yacht and Beach Club, Port Orleans Riverside and the Carribean Beach Resort. It's slotted for 4-12 year olds and since James is on the upper end you might want to look into it further to find it if it is truly something he would want to do. I think it's an 'active' adventure so that may or may not be an issue too. Just something to look into. There's also something where you can go at MK and get all made-up like a pirate (I'll go back and try and find it and edit this post with the details).

Then if he is really into Pirates there is a dinner show in Orlando called, coincidentally enough, the Pirates Dinner Adventure. GKTW offers reduced priced tickets to this show........free for Wish child and 50% off for the rest of the family (you will likely be getting an expense check that will allow you to do a fair amount of extras). I don't know if you're thinking of doing everything together as a cohesive group all week or if you are considering splitting up at times. There are occasions where the parks are open until the wee hours of the morning and James may not be up for it. On such a night one of you could consider taking James and a sibling or two to the Dinner and then go back and meet up with the rest of the gang at the park. Just tossing out things to consider.

Also, if you are trying to work around a theme like Pirates (some of us have done that) GKTW offers free tickets to Pirates Island Adventure Golf in Kissimmee........... a 5 minute drive from the Village. I don't know how cheesy it is, you could always check out their site to see if they have photos.

Just throwin' stuff out to you



edited to add: ok just found the Pirate makeover thingy........................it's called the Pirate League and it's located next to the Pirates of the Carribean attraction in the MK. The makeover boys/girls/adults to like like pirates with makeup, bandannas etc.




btw: hi to James