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

[alaskanabbott]

Hi, I hope I'm doing this right! I guess I'll do a short intro to our family! I am Amber and my hubby is Mike. We have 6 super amazing children. DS D is 17, DS C is 15, the twins James and DD MY are 12, DS E is 10 and DD MZ is 5. James and Macylea were born at 29 weeks and spent about 3 months in the NICU. James hard about 5 minutes of no oxygen, and ended up with CP. Macylea, fiesty as ever, ended up with glasses...James is a happy sweet 12 year old boy who up until a year ago loved to swim and ride his bike, and play with his brothers and sisters. His CP caused him to be clumsy and he is developmentally delayed, he operates at about an 8 year old level, but his reading/math abilities are at about 5 yr/old. Then last May James developed a severe stomache ache. After x-rays, doctors thought James had pnumonia and he was sent home. Over the next few weeks James' health deteriorated rapidly. Finally, after about 6 months, doctors found several masses in James' abdomen. James is now in a wheelchair, due to muscle wasting, and cannot eat food very easily. He has a feeding tube that gives him al his nutrician. Unfortunatly, the cause of James illness is still unknown, so we have no idea what his prognosis is. He has spent much of the last year in the hospital, and to make matters worse, we have to fly form Alaska to Seattle for these hospital stays. He was in the hospital for every holiday last year except Thanksgiving. Also, since he is still "undiagnosed" he endures many painfull tests, while doctors try to pinpoint why is is so ill. James was granted his wish to go to Disney World, and we all going in March. The other kids are delighted and I'm so glad that everyone gets to be special during this trip. With me being out of state so much with James, my oldest sons have had to pull a lot of weight since James got sick. Everything form cleaning, to shopping to cooking, and have done so without one complaint! My hubby has shown what real men do when faced with a crisis...he has been the most terriffic rock a woman could want. He has taken so much time off work to be home with the kids while I'm away, and never once has he complained about finances. One of the interesting things James has had happened during this illness is that his eyes no longer work in stereo, making it hard to see well. James LOVES books, and really loves stories about Egypt and Pirates. Every night, and I mean EVERY night, his brother Elijah reads to him until he falls asleep. Again, though it means that Elijah has to read what james wants, he has never once complained about this, he just one night started to read to him, and kept it going. Elijah even gets excited to hear a book James wants is at the library, and will check out books for his brother on his library day. James twin sister Macylea does so much for him I can't list it, just know that she is right hand girl, and whatever he needs, she does. Finally the baby of the family, Mackenzie, had to give up being a "baby". James requires so much care that she to grow up. Since James can't get up and paly now, she brings toys to him, and plays with him on the floor, or reads him books, or just snuggles him on the couch if he's needing some down time.
Now about the wish...James wanted to go to Disney World and he was approved. I'm nervous about traveling with a child who is in a wheelchair and has a feeding tube! Can you bring his formula on the plane? I have so many ????'s The kids are super excited about GKTW, and everything. I have been reading every thread before mine for tips.

 

[noahsketomom]

Hi Amber,
I'm new here too, but just wanted to welcome you! We are going in April, so I don't have that much information, but the folks here are great at sharing everything they know! Your family sounds amazing -- stepping up for the good of the whole in the midst of crisis. WOW.

We won't be bringing formula, but my son is on a very strict diet (ketogenic), and will be bringing special drinks and food. I've contacted the TSA and they assured me there won't be a problem as long as we have a doctor's note. I know other's have brought formula and will have much more to add.

In the meantime, WELCOME! Can't wait to hear all about your planning....and your trip!!!

 

[alaskanabbott]

HI Thanks for stopping by to say Hi! We just got our wish about ten days ago...so we are clueless! We are still waiting to hear the tickets are final...though GKTW is already reserved. Are you staying at GKTW?

 

[noahsketomom]

Are you staying at GKTW?

Yes. We haven't gotten our packet yet, but reading about the other trip reports has given me a lot of information! I'm going to try to paste the link to the beginning of the Wish trip thread here, but forgive me if it doesn't like right...I'm still new and get confused easily!

http://www.disboards.com/showthread.php?t=2356343

 

[Nettaboo]

I just wanted to stop by and say what a fantastic family you have!I teared up reading how awesome your kids are! You are a great mom and have obviously raised them well!!!

 

[alaskanabbott]

I'm going to try to add some pictures so you know the rather large cast!

This is me, Amber

My Husband Mike with our son Elijah

our oldest boys Dakota(17) and Caelan (15)

James, the wish boy, this is when he first started getting sick, so he still has some perky-ness

And this is last month (after loosing 25lbs)

Here is James' Twin sister Macylea

and one of her where you can see her pretty face (with the youngest Mackenzie)

This is my youngest girl Mackenzie (5)

and this is at the Fourth of July parade last year..Macylea, Elijah, Mackenzie James and Me

Well that's our family!

 

[alaskanabbott]

OK, I just spent an hour getting my signature right on here...maybe hubby is right about the "obsessed" part

 

[3princesses+aprince]

Hi, joining in on your pre trip report fun! Very lovely family. Can't wait to hear all about your planning!

 

[Momofwishkid]

Hi Amber, Im so glad you got the signature working. You have a beautiful and amazingly strong family. I live in Washington and we go to Seattle Children's pretty regularly. I would love to meet you if your ever back this way. I know a friendly face and a coffee break can mean alot during those hospital stays.

 

[alaskanabbott]

Hi, joining in on your pre trip report fun! Very lovely family. Can't wait to hear all about your planning!

Hi, welcome! I can't wait to start planning! I've been putting it off until we get the final say that the flight is booked, but so far so good for March 16th.

 

[alaskanabbott]

Hi Amber, Im so glad you got the signature working. You have a beautiful and amazingly strong family. I live in Washington and we go to Seattle Children's pretty regularly. I would love to meet you if your ever back this way. I know a friendly face and a coffee break can mean alot during those hospital stays.

hi, nice to meet you! We just got back from Seattle and we were suppose to be flying there today for another round of appointments but James needs a break right now, and nothing they were doing was important enough to go through that trip right now. We found a doctor in Anchorage who is putting in his g-tube, and doing some other "stuff", and we found a neurologist in town who is seeing him now. I'm sure we'll be down again before too long though, and I would LOVE to meet you! And coffee? The Tully's at Seattle Children's is almost worth the 7 hour trip

 

[Momofwishkid]

hi, nice to meet you! We just got back from Seattle and we were suppose to be flying there today for another round of appointments but James needs a break right now, and nothing they were doing was important enough to go through that trip right now. We found a doctor in Anchorage who is putting in his g-tube, and doing some other "stuff", and we found a neurologist in town who is seeing him now. I'm sure we'll be down again before too long though, and I would LOVE to meet you! And coffee? The Tully's at Seattle Children's is almost worth the 7 hour trip

You'll definetley have to let me know when your in town again. That Tully's is amazing. I dont know how much money I've spent there and there strawberry bananna shakes for the kids are great too.

 

[alaskanabbott]

You'll definetley have to let me know when your in town again. That Tully's is amazing. I dont know how much money I've spent there and there strawberry bananna shakes for the kids are great too.

The only thing James would drink by mouth is the white chocolate carmel hot coco from Tully's, so I bought him one every day...then ended up drinking what he couldn't, which is why I come back 5lbs bigger every trip! (heaven knows it's not the hospital food, since it's un-edible)

 

[Momofwishkid]

The only thing James would drink by mouth is the white chocolate carmel hot coco from Tully's, so I bought him one every day...then ended up drinking what he couldn't, which is why I come back 5lbs bigger every trip! (heaven knows it's not the hospital food, since it's un-edible)

A good tip for the next time your there is if your up go to the cafeteria between 2:30 and 3:00 in the morning. That's when the head chef comes in and he'll make anything you want right there and you get it at half price. He makes really good omlets. Oh the things you learn when you spend so much time inpatient.

 

[alaskanabbott]

We just got our ticket confirmation...so now we know when we travel, hurray!
Looks like we're leaving out of Anchorage at 1:30am on March 15 and we get to Orlando at 5:30pm. We had thought the tickets would be from our town, but instead it looks like we are going to drive to Anch, about a 3 hour drive, whew...so with the 2 hours you need to check in early, looks like we will start out for WDW at around 5pm on March 14th, making our total travel time 24hours. You know what? WHO CARES...we're going to Disney World!!!!
AND.....we fly back March 22, leaving at 8:30am.

 

[alaskanabbott]

A good tip for the next time your there is if your up go to the cafeteria between 2:30 and 3:00 in the morning. That's when the head chef comes in and he'll make anything you want right there and you get it at half price. He makes really good omlets. Oh the things you learn when you spend so much time inpatient.

Are you kidding me! I have starved myself silly there, ugh, if only I'd known! a few days after X-mas I took the bus to the mall (big one with JC Penny's) and got California Pizza. I ordered a pizza, some rolls, a salad, all kinds of food to go...then ate it for the next week. ( I also bought a box of Sees Candy and ate that TOO!)
We shared a room with one family that we got pretty close to. One night, it had been a particularly bad one, she went for a walk and came back with a brown bag of wine!!! She proceeded to sneek sips all night! Before James got sick I would have been so much more judgemental, now I know how crazy life is with a sick kid.

 

[thatkid]

congrats on your son getting his wish!!
I don't know if anyone answered your formula question
but I'm also tube fed and had no problem bringing mine, other than the fact that it got left in toronto because it was being checked over by security
Just make sure they know its medical, and you should be okay. We were able to get mine tracked down and shipped to GKTW, your airport greeter in orlando can help with any issues you have when you get there, but hopefully everything is good

 

[alaskanabbott]

congrats on your son getting his wish!!
I don't know if anyone answered your formula question
but I'm also tube fed and had no problem bringing mine, other than the fact that it got left in toronto because it was being checked over by security
Just make sure they know its medical, and you should be okay. We were able to get mine tracked down and shipped to GKTW, your airport greeter in orlando can help with any issues you have when you get there, but hopefully everything is good

hi thanks for your advice. Did you need a note from the doctor about the formula?
Also, did you send down your formula for the week, or have it shipped?

 

[Momofwishkid]

Are you kidding me! I have starved myself silly there, ugh, if only I'd known! a few days after X-mas I took the bus to the mall (big one with JC Penny's) and got California Pizza. I ordered a pizza, some rolls, a salad, all kinds of food to go...then ate it for the next week. ( I also bought a box of Sees Candy and ate that TOO!)
We shared a room with one family that we got pretty close to. One night, it had been a particularly bad one, she went for a walk and came back with a brown bag of wine!!! She proceeded to sneek sips all night! Before James got sick I would have been so much more judgemental, now I know how crazy life is with a sick kid.

So funny!
There are also several places that will deliver to the hospital. Pizza,chinese and such. Just ask the nurses for the menu or all the front desks have it. I've only done it once as it gets expesive living in the hospital.

 

[thatkid]

hi thanks for your advice. Did you need a note from the doctor about the formula?
Also, did you send down your formula for the week, or have it shipped?

I brought all of my weeks formula on the plane, in a suitcase through checked luggage.
It was 50 cans, so it was easier (and cheaper) to bring it on the plane.
Some airlines don't charge for medical supplies. Westjet didn't, which is who we flied with.
I didn't need a doctors note, but my pump actually set of the security alarms, so they did a better search of my stuff, so just make sure if he gets upset in situations like that that you either put his pump in checked luggage, or bring a doctors note with you so its not too embarassing for him. I don't remember how old he is, but my tube is embarassing for me (i'm 18) so i try to keep it hidden and them looking at all my tubing was kinda insane, haha.
so, after my rambling, it would probably be a good idea to bring a note and tell security he has tubing, etc. so there's not too much of an issue.