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Old 02-16-2010, 08:21 PM   #16
alaskanabbott
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Originally Posted by Momofwishkid View Post
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.
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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
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Old 02-16-2010, 08:30 PM   #17
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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
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Old 02-16-2010, 08:51 PM   #18
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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?
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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 02-16-2010, 09:44 PM   #19
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Originally Posted by alaskanabbott View Post
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.
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Old 02-16-2010, 10:07 PM   #20
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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.
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Old 02-17-2010, 12:23 AM   #21
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Amber, I'm so excited you have dates and flights! Woohoo!
I have flown many times with my daughter who uses a wheelchair. I would recommend getting there a few minutes earlier than you would normally, because they will have to inspect it at security. Once you get through there, you will be able to board early if you like, and then gate check the chair (leave it at the door of the airplane and the crew will stow it underneath, then bring it back up to you when you land). If he can't walk at all, or you/your hubby can't carry him, they have an aisle chair that he can sit on to get to his seat. Let them know if you need this when you check in. When you land, it will often take them a few minutes to get the chair up to the doorway, so you might want to wait in your seats until everyone is off the plane and the chair is there for sure. (If you have a small window of time to transfer to another flight, make sure you talk to the flight crew about that before you land).

I commented about not having a diagnosis on the Wish trip thread, but having read your intro to your family I have to say a little more. For us, having no diagnosis didn't change anything about our daughter. She has grown stronger and made progress through the years. The unknown is still a little scary but she is doing well. Seeing your son develop new health concerns, lose weight and strength etc, is a totally different ball game and I can see why not having a diagnosis is such a challenge for you guys. I hope they can get to the root of it all.

It was great to "meet" your family. You have beautiful kids!
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Old 02-17-2010, 12:33 AM   #22
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I commented about not having a diagnosis on the Wish trip thread, but having read your intro to your family I have to say a little more. For us, having no diagnosis didn't change anything about our daughter. She has grown stronger and made progress through the years. The unknown is still a little scary but she is doing well. Seeing your son develop new health concerns, lose weight and strength etc, is a totally different ball game and I can see why not having a diagnosis is such a challenge for you guys. I hope they can get to the root of it all.

It was great to "meet" your family. You have beautiful kids!
Hi Melissa,
it IS a challange dealing with the unknown, but realy, which one of us "knows"? I read on a thread here (can't remember which) about the little boy who past away last week. I went to his caring bridge and it sounded so much like James, and I thought about how you can KNOW your child is ill, yet still be surprised by their illness. I'm not sure if that makes sense. It does in My head, lol!
Thanks for the tips on travel, exactly what I need right now!
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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, 01:19 PM   #23
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Hi Amber, I just finished reading and getting caught up You have such a great attitude, I love seeing that! We all think that other special needs parents are all like us, but as Piper's team sometimes reminds me, there are parents who don't do everything they should, or are way pessimistic, so "Go, You!!" As far as meds go, our chapter told us to have a list of all Piper's meds made up by her Dr, so there won't be any complications with the airport. That being said, we have flown before, without a Dr's list of her meds, and never had an issue. So we're taking a list this time, I'll be interested to see if it makes any difference. Anyway, looking forward to reading more!
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Old 02-17-2010, 02:17 PM   #24
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Hi Amber, I just finished reading and getting caught up You have such a great attitude, I love seeing that! We all think that other special needs parents are all like us, but as Piper's team sometimes reminds me, there are parents who don't do everything they should, or are way pessimistic, so "Go, You!!" As far as meds go, our chapter told us to have a list of all Piper's meds made up by her Dr, so there won't be any complications with the airport. That being said, we have flown before, without a Dr's list of her meds, and never had an issue. So we're taking a list this time, I'll be interested to see if it makes any difference. Anyway, looking forward to reading more!

Hi,
Well we kind of have to have a good attitude, b/c what's the alternitive? Last month we saw a teacher of James' who hasn't seen him since he got sick...and even I admit he looks AWFUL. She took one look at him and started crying! So I asked her if she needed a hug....and as I'm hugging her, reassuring her that my son is going to be ok, I realised just how nutty life is . Funny thing is, I had to do that again last week at church with someone else, hugged her while she cried about my son, and told her I'm sure he's going to be just fine. Then I had someone tell me how "brave" I am. That one really made me laugh b/c it's not bravery, it's SHOCK! I'm still in shock about him being sick. Brave nothing, if I could make him unsick I'd do it! So after that rant..."GO US" "GO OUR KIDS" and God grant me enough "shock" to get through the res of it!
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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, 07:14 PM   #25
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We found out some more news on our trip today. We are going to rent a car and drive to Anchorage on the 14th. Once we get to Anch, the board for our Wish Org. is going to take the family out to dinner, and then we will head to the airport. Our wish org. is sending us up a day early! But since we are only checked into GKTW from March16-22, GKTW isn't sure they will have our room when we get in on the 15th...in that case the wish org. is going to put us up in a close-by hotel for the night. They said we will go directly from the airport to GKTW...get checked in, then if the room isn't ready, we will go back to the hotel. This is the BEST senerio I could have hoped for. We get in to Orlando at 5:30pm, and I figure won't be at GKTW until about 6:30pm (or later, I don't know??) and since we'll have been traveling almost 24 hours we will want some rest! Then we can be up and at them first thing the next morning. Hurray!
Now anyone have any good tips for the two seperate 3 hour layovers we have?
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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
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Old 02-17-2010, 07:23 PM   #26
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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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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
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Old 02-18-2010, 02:41 AM   #27
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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, 10:44 AM   #28
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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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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
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Old 02-18-2010, 12:44 PM   #29
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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, 02:17 PM   #30
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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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TR-THE WEEK OF YES!http://www.disboards.com/showthread.php?t=2428215
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