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Old 02-15-2010, 01:46 PM   #1
alaskanabbott
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Talking Getting his Wish, James is Going to WDW- GKTW March 16, 2010

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.

Last edited by alaskanabbott; 08-31-2013 at 08:42 PM.
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Old 02-15-2010, 02:29 PM   #2
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Welcome!



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!!!
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Old 02-15-2010, 03:52 PM   #3
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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?
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Old 02-15-2010, 04:24 PM   #4
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Originally Posted by alaskanabbott View Post
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
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Old 02-15-2010, 05:06 PM   #5
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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!!!
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Old 02-16-2010, 12:36 PM   #6
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Planning

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!
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-17-2010, 06:23 PM   #7
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Wheelchair bag

I went to the fabric shop today and got a pattern (Simplicity 2822) for making wheelchair bags. There are a couple different designs, and one for the back and one for the side. I bought some Pirates of the Carribean fabric, and am going to attempt to make these bags before we leave. There was tons of fun Disney fabric to pick from, but the whole cost, with the pattern, fabric and velco was under $20. That will make one back bag and one side bag. Just wanted to share this in case anyone wants to copy
BTW, I have not sewn for about ten years, and even then it wasn't pretty!
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DS-21 DS-19 DS-16 DD-16 DS-14DD 9
James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-18-2010, 01:41 AM   #8
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Quote:
Originally Posted by alaskanabbott View Post
I went to the fabric shop today and got a pattern (Simplicity 2822) for making wheelchair bags. There are a couple different designs, and one for the back and one for the side. I bought some Pirates of the Carribean fabric, and am going to attempt to make these bags before we leave. There was tons of fun Disney fabric to pick from, but the whole cost, with the pattern, fabric and velco was under $20. That will make one back bag and one side bag. Just wanted to share this in case anyone wants to copy
BTW, I have not sewn for about ten years, and even then it wasn't pretty!
Amber, I admire you for using your long-lost sewing skills for his wheelchair bags. I don't know if the handles are the same width, but I have a black and purple bag that came with Phoebe's chair that we've never used. If you're interested, tell me the measurements of his chair back and handles and I'd be nappy to send it to you. Just in case you run out of time to make both from scratch.
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Old 02-18-2010, 09:44 AM   #9
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Amber, I admire you for using your long-lost sewing skills for his wheelchair bags. I don't know if the handles are the same width, but I have a black and purple bag that came with Phoebe's chair that we've never used. If you're interested, tell me the measurements of his chair back and handles and I'd be nappy to send it to you. Just in case you run out of time to make both from scratch.

AWW thanks! I wil measure today...We usually just use a back pack, but for the trip I wanted to do something special. His PT ordered a new chair this week, and I'm really hoping it's here before we leave.
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DS-21 DS-19 DS-16 DD-16 DS-14DD 9
James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-18-2010, 11:44 AM   #10
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HI Amber................

Just getting caught up here and saw your thread. Welcome! We had our Wish trip for my son Matty in December and while I spend most of my time now fretting over my TR (which is stalled at the moment LOL) I do like to follow along with everyone else. I had soooo much fun planning in November and have become Disney obsessed with two more trips planned for this year. You will learn so much here. Everyone is great.

I must say you have quite the handsome/beautiful family

Kudos for such a great attitude..............but I agree, what's the alternative? I like to say I live in a 'healthy state of denial'. IDK, keeps me going

Anyway, just wanted to say hi. I look forward to following along
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Old 02-18-2010, 01:17 PM   #11
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Originally Posted by pacrosby View Post

Kudos for such a great attitude..............but I agree, what's the alternative? I like to say I live in a 'healthy state of denial'. IDK, keeps me going
I LOVE it " A healthy state of denial"...I may borrow that from you
Thanks for following James PTR. I know I need to actually do some planning now that we have our dates, I'm just feeling overwhelmed at where to start.
And thanks for the compliment on my kids..they are a good-looking bunch, and so good too.
I hope we don't get hooked on DisneyWorld, b/c we won't be able to do another trip like this. Honestly, when this started, we though James was going to ask for a laptop
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-19-2010, 04:16 PM   #12
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The Troopers are at the Door!

Well last night during dinner the Alaska Troopers showed up at our house. Wanting to have some fun for a change, they are helping with James' wish. This is double cool, because our oldest boy Dakota is planning on becoming a Trooper and, even though he is only a Junior in HS, has just started his first college course in Criminal Justice. So the Troopers knock and the the kids are beside themselves. James knew they were coming and asked to have his NG tube removed for it. This is one of those heart wrenching times. James is almost 13, he doesn't want to look sick for these Hero's. So he bravely has us remove the tube. If you have ever done the NG tube you know it's not the taking out, it's the putting in...but James is no dummy, he knows once it's out, it's gotta go back So we agree to an NG change. He was so happy being tubeless I think he was hoping they'd be a little late , but nope, they are TROOPERS and arrive on time, with a bag full of goodies for James and his sibs. Dakota is impressed (well as impressed as 17 yr olds get) and actually talks a little, WOW, it's a miracle. So then James asks for a picture and decides he wants one of him STANDING! Ok, well James can walk a bit, but he is usually too weak to do much, and standing isn't very comfortable. So he waits for me to get in position he gets up, drops his blanket to his feet and has me take a picture. Then gets his blankie and lays down again. But at least in his mind, in that picture, he doesn't "Seem" sick.
Here it is:

What amazing gentlemen they were. The bag of goodies kept James happy all night, and he slept with the badge.

Other good news? James is getting his perm. feeding tube on the 26th...which means last night was the LAST NG change ever

One the planning front, so far everything is good EXCEPT we still don't know how we are getting to the airport. It's a three hour drive to Anchorage, and our car only holds 7, not all 8 of us. I called about a rental and they want a $200 drop off fee! uh, NO....so then I thought, ok, maybe we can get a Limo, and just suck it up and pay..that's $450....there, which means another $450 back so no sucking it up...I'm stll not sure what we're going to do, but I'm tired of dealing with it today.
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James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-19-2010, 05:01 PM   #13
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Awwwww, I'm welling up here. What a 'trooper' your boy is (no pun intended).

That is a picture to treasure.

Matty had an ng tube very briefly as an infant.............I was against it from the start and ended up pulling it after 48 hours. I can't imagine having to deal with it day in and day out. So glad to hear he'll be getting something more permanent and won't have to deal with that.

YIKES on the cost to get to the airport!!!! MAW isn't helping you with that? It's odd how different they all can be with regards to that especially given the fact that it could almost qualify as a 'hardship'.................you all getting there. Hmmmmmmmmmmm

Sorry. I'm no help
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Old 02-19-2010, 05:05 PM   #14
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[QUOTE=pacrosby;35506105 Sorry. I'm no help [/QUOTE]

I'm not so sure there is much help...I'm thinking we are going to rent a 15 passenger van, and have me dad drive us up, then he'll have to turn around and drive back, My dad is such a sweetie he will do it without one complaint, but still I'll feel kinda bad. The Wish people offered to pay for the parking at the lot for our car for the week, and that's all. I'm still working on it though!
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DS-21 DS-19 DS-16 DD-16 DS-14DD 9
James PTR-http://www.disboards.com/showthread.php?t=2397705
TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
GKTW-3/10 ASMO-2/11 Disney Wonder-2/12Disney Wonder-11/12Disney Magic-1/13
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Old 02-19-2010, 05:23 PM   #15
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How cool that the Troopers stopped by for a special visit! I love the story of the very first "WISH". It was a boy in Phoenix who wanted to be a cop when he grew up but he was probably not going to grow up, so they made him an honorary officer. So cool how it all began.

I don't know what conversation you've already had, but if you are just assuming they won't pay for transport, you could come out and ask them in a nice way such as, "I was just wondering if I need to start making arrangements for the trip to Anchorage or if you guys had something in mind for that?". Doesn't sound like you are accusing or mad, but also let's them keep a surprise if they happen to have one for you.
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