Gavin's Wish Comes True!! MAW

[jharrowell]

As us Brits say: Just sit back and have a nice cup of tea.

I'm sure it's just a mix up, it'll be fine.

 

[alaskanabbott]

That is awful! I'm so worried about something simular happening to us. We are flying from Alaska, which is a 7 hour trip just to Seattle! With James needing to eat/drink during the day (feeding tube), I asked if there was any way we could fly out the night before and do a "red-eye". Then we could at least get to GKTW on our first day, and I won't have to bring his formula on the plane with the pump and everything else that goes with tube feeds, and give him meds during the flight. I'm suppose to talk to the travel person today, and I'm nervous we're going to be in th esame boat you are. I hope it's a mix up! Oh we had also asked in the begining if we could fly one day early and just pay for our own hotel that first day so we could recoup from the flight, and show up at GKTW first thing in the am...this didn't happen for us, but maybe you can?

 

[Momofwishkid]

As us Brits say: Just sit back and have a nice cup of tea.

I'm sure it's just a mix up, it'll be fine.

Thanks,after a nice warm shower Im calmer now.

That is awful! I'm so worried about something simular happening to us. We are flying from Alaska, which is a 7 hour trip just to Seattle! With James needing to eat/drink during the day (feeding tube), I asked if there was any way we could fly out the night before and do a "red-eye". Then we could at least get to GKTW on our first day, and I won't have to bring his formula on the plane with the pump and everything else that goes with tube feeds, and give him meds during the flight. I'm suppose to talk to the travel person today, and I'm nervous we're going to be in th esame boat you are. I hope it's a mix up! Oh we had also asked in the begining if we could fly one day early and just pay for our own hotel that first day so we could recoup from the flight, and show up at GKTW first thing in the am...this didn't happen for us, but maybe you can?

Thanks, Wow you have a extra long flight. I had asked about extending our trip and they said no also. I believe we are in the same chapter. They told me they already add extra days from the DisneyLand trip because of travel time. Dosnt make since since the people who live close get the same amount of days but Im just glad Gavin's wish will come tre and we'll make of bet of what we get. Hope it goes well with the travel person today.

 

[alaskanabbott]

I'm sure I'm hoping for too much, but it would be great if we only have to connect twice..once in Seattle and once someplace else. We have to take a small plane to Anchorage (about an hour) then Anch to Seattle is about 3hrs 45min. But with all the waits, early check-ins etc, it gets overwhelmingly long!
I hope it gets worked out for you. It's funny becuase I know exactly how you feel. I don't want to seem ungratful at all, I'm so thrilled James is getting this wish! but I also want to make it as wonderful as possible, and we both know our kids are going to be useless that first day from travel.

 

[yinyanggirls]

I'm sure it's a misprint, but I can imagine the anxiety it's causing! Hope you hear back soon!

 

[kellyw8863]

Alright guys Ima little panicky right now. I just got a confirmation e-mail from the shuttle service MAW is getting to take us to the airport and it has a pick-up time of 12:40 pm. Our flight was supposed to leave at 9:35am and still we wouldnt be there until 8:30pm. If they changed our flight to a later time that means if our pick-up is 12:40 an hour ride to airport and get there 2 hours before that puts it at 3:40pm before we even leave and it's a 8 hour flight at least! That means we wouldnt even be getting to Florida until after midnight. OK Im freaking out. I had to get used to the idea of our 1st entire day gone at getting there at 8:30 and now if we dont get there until midnight were going to be to tired to do anything the second day.

Ok, that felt good to ramble on. Sorry about that. Hopefully it's just a mix-up. I already have an e-mail into our Wish Granter so hopefully they'll get back to me before I go Crazy

Ohhhhh, I'd so be freaking out, too. Have you heard anything back yet? It stinks that you already spend your first day traveling. I would hope that they would work with you so that you don't lose a day simply because of where you live. I'll be checking back to see how this pans out...

 

[pipersmom]

Keeping my fingers crossed that you get everything straightened out today, hon Will check back later for an update!

 

[Momofwishkid]

Thanks for the support girls I guess it's kind of funny to get worked up about but I was really stressin. Anyway, I heard back and it was a mistake they had our pick-up scheduled for our connecting flight time. So now were back to the original plan leave here at 9:35am and arrive in Orlando at 8:05pm. So our first day is still gone but that's OK.

 

[jenb1023]

So glad the flight thing is okay! Less than two weeks to go!

 

[alaskanabbott]

still sucks that your first day is basically gone, sorry
Our last day is like that, we leave Orlando at 8:30am our last day

 

[pnutallergymom]

Hi Jenn,

Glad you got the flight stuff figured out! Why is it that I have no idea where you guys are travelling from?? Did I totally miss that??

Its almost here though, are you ready yet??

 

[scouthawkk]

Glad the flight info is still the same. The day may be spent traveling, but at least you know you should be able to get some sleep that night!

 

[Momofwishkid]

Thanks girls I was so glad things were back to the original plan. Shannon we are in Washington state close to Seattle. Gavin got his wheelchair today His PT rented it for us on a trial bases to try out and see if we like it before we get him a permanent one, not to mention insurance wouldn't have gotten one before our trip. Im so glad we have it for the trip but I can already tell it's not one we want permanently but I love that the casters have lights in them it's so cool! For those of you that have experience with wheelchairs is it common to get one with a high back or are those just for people that need upper body support? Also, one of our issues is Gavin's behavior. He often has huge melt downs and when he was in his wheelchair before we often had the issue of him putting the brakes on when I was trying to move him. Can we have the brakes moved to where he cant reach them?? I asked his PT about it and she's going to look into it more for his permanent one but thought I'd ask you guys. Here's a pic of Gavin in his cool wheels

And I tried to get a pic of the lights but you cant see them that good

 

[yinyanggirls]

Oh cool! There are tons of different styles of chairs, so what you need to do before ordering his own personal chair, is make a list of features you need, want, or wonder about. If there is something you want, think about why he needs it because insurance is all about justifying a need. If he will tire out and actually sleep in the chair on occasion, you would want a high back and maybe head rest also. If he will ever ride it to school you might want a head rest for safety reasons. Will he always self propel, or will you be doing most of the pushing? They have different size wheels for various reasons. Phoebe's front wheels are quite small (look like maybe the same as what he has on that loaner) and they got stuck on anything. I hate it. Her next one will not have those small wheels. They also have side supports, if he will get too slouchy. The PT will certainly have some good input, but you want to make sure to think of all these questions before it's ordered. There are adjustments that can be made afterward if needed, or parts added, but it's nice not to have to worry about that later. Congrats on the cool wheels!
(Oh, and they should let him/you choose a color for the frame. They have some fun ones and it's hard to decide. You might want to look at the website and see if the pics of the various chairs bring up any questions for you. Quickie seems to be the most popular manufacturer. Here are the color choices for them.
http://www.quickie-wheelchairs.com/fs/o/images/products/additional_info/documents/eiqscolors.pdf
In Texas we were given a few extra choices (emroidery on the seat, all color choices available) whereas here we were told the lower rows of paint choices cost extra and they don't do embroidery. Keep us posted on what he gets!

 

[Momofwishkid]

Thanks Melissa. I will definetley be thinking about the high back and head support. One of his biggest issue is endurance/fatigue. He is still not back in school but we have a meeting next week and his PT did say using it when he starts school would be a good idea. Anyway thanks for the input and I will let you all know what we end up with. The one thing I really like about the loaner is it's super lightweight. It's a Ti lite. Im loving the embroidery option and all the cool colors. Lots to think about.

13 days tell Disney!! I went and bought me 2 new pairs of shoes yesterday. A pair of Crocs and a pair of Teva mush flip flops. I am not a tennis shoe person so I really hope these wont kill my feet on the trip. One question the crocs have little bumps all over the inside, are you supposed to wear socks with crocs? I know silly question but I've never worn them and dont know anyone that has.

 

[pnutallergymom]

Thanks Melissa. I will definetley be thinking about the high back and head support. One of his biggest issue is endurance/fatigue. He is still not back in school but we have a meeting next week and his PT did say using it when he starts school would be a good idea. Anyway thanks for the input and I will let you all know what we end up with. The one thing I really like about the loaner is it's super lightweight. It's a Ti lite. Im loving the embroidery option and all the cool colors. Lots to think about.

13 days tell Disney!! I went and bought me 2 new pairs of shoes yesterday. A pair of Crocs and a pair of Teva mush flip flops. I am not a tennis shoe person so I really hope these wont kill my feet on the trip. One question the crocs have little bumps all over the inside, are you supposed to wear socks with crocs? I know silly question but I've never worn them and dont know anyone that has.

You can definitely wear socks with them if you want! I have seen lots of people do it. We don't with ours. I bought Crocs for myself and all the kids our first trip and LOVED them!! Your feet will get used to those little bumps...I actually forgot they had them!! They are great for the rides you get wet on too...Dry super quick!!!

 

[pacrosby]

13 days?????????? Holy Cow...............how did that happen?

Are the kids bouncing off the walls yet?

Glad to hear the flight fiasco ended up just being a mix-up. Like you needed the added stress huh?

I can't help you with the shoes.................the kids and I just wore cheapie Walmart flip flops. Guess we have tough feet LOL

 

[alaskanabbott]

RE: Wheelchair...James has to have a high backed chair for the bus, but he has "muscle wasting" so they were worried if the bus stopped his head would go all bobbly.
We were given a "make-do" wheelchair last July, back when I was still able to convince myself his illness was temporary, but it isn't a very good chair.
James' PT sent the order for a custom chair in last week, and I was told we may want a "tilt in space" so that it reclines when James gets tired (most of the day) and it is easier for his tube feeds. I seriously doubt we'll have his new on before we leave (3 weeks 3days)
OK, is it normal that I'm jealous your son got a rental wheelchair? He looks so happy in it, and I love the red. How cool that they can be made so custom. I found a thing that goes on the front of kiddy w/c's that looks like a semi truck, or a fire truck, they are so cute. James is too big for those now, but I thought they looked fun for younger kiddo's.
I'm so glad you posted about renting, b/c I had never even thought about renting one.

 

[Momofwishkid]

You can definitely wear socks with them if you want! I have seen lots of people do it. We don't with ours. I bought Crocs for myself and all the kids our first trip and LOVED them!! Your feet will get used to those little bumps...I actually forgot they had them!! They are great for the rides you get wet on too...Dry super quick!!!

Thanks, I wore them all day today and the little bumps actually arent bad at all. Pretty used to it already. I just didnt want to look completley silly.

13 days?????????? Holy Cow...............how did that happen?

Are the kids bouncing off the walls yet?

Glad to hear the flight fiasco ended up just being a mix-up. Like you needed the added stress huh?

I can't help you with the shoes.................the kids and I just wore cheapie Walmart flip flops. Guess we have tough feet LOL

I used to have tough feet but not anymore. The boys got cheap wal mart flip flops today though. I love them and thats all I usually wear but I figured this as a good excuse to get me some nice flip flops. The Teva's are really comfy. The kids are getting really excited they love to take their countdown #'s off every night and have a little happy dance. It's so cute

RE: Wheelchair...James has to have a high backed chair for the bus, but he has "muscle wasting" so they were worried if the bus stopped his head would go all bobbly.
We were given a "make-do" wheelchair last July, back when I was still able to convince myself his illness was temporary, but it isn't a very good chair.
James' PT sent the order for a custom chair in last week, and I was told we may want a "tilt in space" so that it reclines when James gets tired (most of the day) and it is easier for his tube feeds. I seriously doubt we'll have his new on before we leave (3 weeks 3days)
OK, is it normal that I'm jealous your son got a rental wheelchair? He looks so happy in it, and I love the red. How cool that they can be made so custom. I found a thing that goes on the front of kiddy w/c's that looks like a semi truck, or a fire truck, they are so cute. James is too big for those now, but I thought they looked fun for younger kiddo's.
I'm so glad you posted about renting, b/c I had never even thought about renting one.

Does James have a PT? If so I would ask them about possibly putting in for a rental for your trip so since your other wont be in. That's what their doing for us. Where did you see the truck's and such for the chair's I'd be interested in looking at them.

 

[alaskanabbott]

Does James have a PT? If so I would ask them about possibly putting in for a rental for your trip so since your other wont be in. That's what their doing for us. Where did you see the truck's and such for the chair's I'd be interested in looking at them.

I will find the link...
yes, we spoke to the PT today and he said the chair will deff not be ready. So we're looking for a rental.