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

[yinyanggirls]

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!

 

[alaskanabbott]

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!

 

[pipersmom]

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!

 

[alaskanabbott]

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!

 

[alaskanabbott]

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?

 

[alaskanabbott]

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!

 

[yinyanggirls]

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.

 

[alaskanabbott]

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.

 

[pacrosby]

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

 

[alaskanabbott]

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

 

[alaskanabbott]

Here's a question...Mackenzie is 5 1/2, she is pretty good at walking, but I think this is going to be a lot of walking to expect from her. What are other parents of the 4-6 year old group doing? Can they still fit in those umbrella stollers?

 

[alaskanabbott]

So today I have two kids home sick. It's NOT H1N1. I know b/c we all got the flu shot and the H1N1 vacs this year. Now I'm thinking, with two out of 6 sick, and me not feeling so great, what a waste of time and money those darn shots were!
My youngest daughter was reffered to an ENT this week because of "speech problems". We just got back from that and the Dr wants her to have her tonsills and adnoids removed, and tubes put in her ears. AHHHH for the days when that would have upset me. Now I'm like "Yeah, I'll jump right on that....eventually" Thank goodness we had a good doc who was very okay with us waiting until late summer to have that done. Seriously, I have put the kids on notice, no more illness or mommy's going for a long drive...a LONG LONG drive.
Though Mackenzie did make me laugh today at the Dr office. We were talking about Jonah and the whale and how Jonah tried to hide from God, but God is everywhere and can see you all the time and she said "Soooo God is like Santa...." and I'm thinking maybe I need to be reading the Bible to her a little more...when she finishes with "...and can see me pick my butt" which I guess is the worst sin she's commited. Yeah, I decide...more Bible time.

 

[Mtopher4]

How funny.. Sounds like something my daughter would say. She has bible twice a week at PreK and comes up with the funniest stuff.

I see your trip is coming up fast. Your better than me.. I would be screaming at the Dr. for a diagnosis.. I think I posted somewhere I wouldn't handle not knowing well

Yeah for your Trip.. Can't wait to hear ALL the details.

 

[Mtopher4]

Just hadto comment.. I have gained about 50 pounds since Ash was born. Our Hospital in Dallas has Awesome food and I'm a stress eater ;( Nothing else to do in the hospital right?

 

[alaskanabbott]

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Our tentitive schedule

 

[alaskanabbott]

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Our tentitive schedule

Oh too bad, I thought it would embed

 

[alaskanabbott]

Oh we pester, but as of right now my child is a SWAN..syndrom with a name...we are suppose to be going to Childrens Hospital in Philadelphia when we get back, but after months at Seattle, I don't think Philly is going to come up with anything new. Still, we're going to hope, or else that's just a very expensive trip for more un-answers.

I'm an emotional eater too. I'm doing Weight Watchers right now trying to drop 10lbs for the trip, but I make too many poor food choices, ie cookies, muffins, cakes etc for the kids (yeah, right, kids!) and it's pretty unlikely I'm going to loose weight. Even if I do, I'm planning on eating my way through the trip, so I'll just regain..I was the first one to say "Whoot Whoot... Sundaes for Breakfast!"
You know what? Kids like a mom with some roundness and softness...who wants to cuddle a skinny mom!

 

[Momofwishkid]

Here's a question...Mackenzie is 5 1/2, she is pretty good at walking, but I think this is going to be a lot of walking to expect from her. What are other parents of the 4-6 year old group doing? Can they still fit in those umbrella stollers?

Just wanted to say you will get a free rental stroller at the parks. I hear there not very comfy though, dont recline but it may be an option. Or you can rent a really nice one from Orlando stroller rental and they have the special needs stroller that fits up to 100lbs. I believe it is.

So today I have two kids home sick. It's NOT H1N1. I know b/c we all got the flu shot and the H1N1 vacs this year. Now I'm thinking, with two out of 6 sick, and me not feeling so great, what a waste of time and money those darn shots were!
My youngest daughter was reffered to an ENT this week because of "speech problems". We just got back from that and the Dr wants her to have her tonsills and adnoids removed, and tubes put in her ears. AHHHH for the days when that would have upset me. Now I'm like "Yeah, I'll jump right on that....eventually" Thank goodness we had a good doc who was very okay with us waiting until late summer to have that done. Seriously, I have put the kids on notice, no more illness or mommy's going for a long drive...a LONG LONG drive.
Though Mackenzie did make me laugh today at the Dr office. We were talking about Jonah and the whale and how Jonah tried to hide from God, but God is everywhere and can see you all the time and she said "Soooo God is like Santa...." and I'm thinking maybe I need to be reading the Bible to her a little more...when she finishes with "...and can see me pick my butt" which I guess is the worst sin she's commited. Yeah, I decide...more Bible time.

Oh I sorry the kids are sick.Hope their feeling better soon and you dont end up with it. Gavin had the whole tonsils, adnoids and tubes when he was younger and it did help with his speech and sleeping patterns. I so understand the wanting to put it off though. What a cutie Mackenzie is. Kids say the darndest things.

 

[alaskanabbott]

Just wanted to say you will get a free rental stroller at the parks. I hear there not very comfy though, dont recline but it may be an option. Or you can rent a really nice one from Orlando stroller rental and they have the special needs stroller that fits up to 100lbs. I believe it is.

Will GKTW direct us to them or do we need to figure that out before we leave?

 

[KirstenB]

OP, You guys are all gorgeous!!! I love the way your other kids all pitch in, great family!