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Old 09-27-2012, 01:40 AM   #2146
aym4Him
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Originally Posted by jjmomof4
We've arrived at GKTW and it's wonderful!

Off to IOA tomorrow and then back to enjoy the Christmas party. Looking forward to a wonderful week of memories and fun! Thank you again everyone for the advice and input. I feel so relaxed and stress free, our week is planned out, with lots of room for change as needed, and I am ready to enjoy!

Colin, who is not so much a Mickey fan, was overwhelmed with his surprises from GKTW when we arrived, and said over and over by bed time that his Mickey stuffed animal was his favorite ever!

Thanks,
Jennifer
Woo-hoo!!! Can't wait to hear more! But you can wait til you get home. ;-) Go and make some memories!!

Awwww..Glad Colin loves his Mickey!
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Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 09-27-2012, 01:53 AM   #2147
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[QUOTE=

Last week we got some really cool news for Braden. He was chosen by Riley Hospital (his "home" hospital here in Indy), as a Coin Toss Kid for an upcoming Indianapolis Colts vs. Green Bay Packers game at Lucas Oil Stadium! They are providing tickets for our family for the game, a limo to and from the game, Braden and I get to go down on the field before the game, and then he gets to be with the captains from both teams and the refs for the coin toss! He will also be featured in the program for that days game! The game also happens to be exactly one week before we leave on his wish trip!!!

Tonight was also a great night... it was Braden's Wish Party! His party was held at Coldstone Creamery, and he had a blast! We have updated his PTR with pics!!! Just over two weeks to go...[/QUOTE]

That is so cool! I hope you guys have a great time at the game! I'll go check out your PTR for pics! Cold Stone sounds like a great place for a send off party!


Quote:
Originally Posted by jjmomof4 View Post
We've arrived at GKTW and it's wonderful!

Off to IOA tomorrow and then back to enjoy the Christmas party. Looking forward to a wonderful week of memories and fun! Thank you again everyone for the advice and input. I feel so relaxed and stress free, our week is planned out, with lots of room for change as needed, and I am ready to enjoy!

Colin, who is not so much a Mickey fan, was overwhelmed with his surprises from GKTW when we arrived, and said over and over by bed time that his Mickey stuffed animal was his favorite ever!

Thanks,
Jennifer
I hope you guys have a magical time!

Jackie
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Old 09-27-2012, 05:31 AM   #2148
jmerchlinsky
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Smile Monday

Ok so we leave for GKTW Monday am . I got disifcent wipes for the plain but did not even think about the rental car or rental strollers ect .. Back to walmart i go We are all packed . Well all most meds go in the morning of and doing carry ons Friday
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Old 09-27-2012, 09:34 AM   #2149
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Quote:
Originally Posted by jjmomof4 View Post
We've arrived at GKTW and it's wonderful!

Off to IOA tomorrow and then back to enjoy the Christmas party. Looking forward to a wonderful week of memories and fun! Thank you again everyone for the advice and input. I feel so relaxed and stress free, our week is planned out, with lots of room for change as needed, and I am ready to enjoy!

Colin, who is not so much a Mickey fan, was overwhelmed with his surprises from GKTW when we arrived, and said over and over by bed time that his Mickey stuffed animal was his favorite ever!

Thanks,
Jennifer
AWESOME! I hope you guys have a blast, as I am sure you will Cant wait to hear all about the trip
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Old 09-27-2012, 06:14 PM   #2150
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We've got dates!! Oct 29 - Nov 4. And we're staying at GKTW!!! So excited!!!!!!!!!
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Old 09-27-2012, 06:38 PM   #2151
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Originally Posted by Mama2Josh View Post
We've got dates!! Oct 29 - Nov 4. And we're staying at GKTW!!! So excited!!!!!!!!!



Yay for dates!! It won't be long now!
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Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 09-27-2012, 08:51 PM   #2152
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We've got dates!! Oct 29 - Nov 4. And we're staying at GKTW!!! So excited!!!!!!!!!
Just so you know, GKTW is changing the entertainment schedule a little that week. The halloween party is being switched with Village Idol. So, the night of Halloween will be the GKTW Halloween Party and Village Idol will be the night you arrive.
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Old 09-28-2012, 12:09 AM   #2153
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I know this is off-topic...

Y'all...Please pray for David. He's not doing well at all and is back in the ICU. Last week, the hope was that he could come home for a while but I'm not sure if he'll pull through...he's really struggling. (Can't remember where I shared about him but they found out he's not a candidate for a heart transplant earlier this week). http://www.caringbridge.org/visit/babyhood

Thanks. My heart is shattered. He's had such ups and downs since the Fontan and it's just been heartbreaking. I can't fathom how his parents have felt but I know how emotional and exhausted I have been. I'm sure it's .0000010% of how they've felt. I just want him to bounce back and have some fun for a bit. He's been so sick the past few days.

Sorry to be a bummer right now amidst all this celebration but I know you guys understand.

Please pray and share with everyone you know. Let's storm the gates of Heaven with this family as they are on their knees for their little warrior.

Thank you so much.

Bleargh. I need a hug or twenty.
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Our Family: Dillon (DH), Amy (me), and Ethan (Wish Kid Alumni)

Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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Old 09-28-2012, 10:12 AM   #2154
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We've got dates!! Oct 29 - Nov 4. And we're staying at GKTW!!! So excited!!!!!!!!!
WooHoo - yay for dates!!! It is so close too!
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Old 09-28-2012, 10:17 AM   #2155
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Y'all...Please pray for David. He's not doing well at all and is back in the ICU. Last week, the hope was that he could come home for a while but I'm not sure if he'll pull through...he's really struggling. (Can't remember where I shared about him but they found out he's not a candidate for a heart transplant earlier this week). http://www.caringbridge.org/visit/babyhood

Thanks. My heart is shattered. He's had such ups and downs since the Fontan and it's just been heartbreaking. I can't fathom how his parents have felt but I know how emotional and exhausted I have been. I'm sure it's .0000010% of how they've felt. I just want him to bounce back and have some fun for a bit. He's been so sick the past few days.

Sorry to be a bummer right now amidst all this celebration but I know you guys understand.

Please pray and share with everyone you know. Let's storm the gates of Heaven with this family as they are on their knees for their little warrior.

Thank you so much.

Bleargh. I need a hug or twenty.
Amy,
That just breaks my heart - I will pray for David and his family - and for you too since I know how heavy your heart is too. Hugs to you too...I know your heart is hurting as well.
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Old 09-28-2012, 10:54 AM   #2156
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Wink 3days/2days and a wake up

Ok every one I need to pick your brains .. I know i packed every thing so far but what is the one thing that you forget to pack that u need ????
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Old 09-28-2012, 12:26 PM   #2157
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Ok every one I need to pick your brains .. I know i packed every thing so far but what is the one thing that you forget to pack that u need ????
I don't know, but I am thinking about that too and I haven't started to pack yet. I just try to go through my entire day and think of everything I need, then I try to think of things we will do while we are there and think of the things we will need. I know...not much help. We never get to go on vacations, so I am afraid I will forget to pack something too. I hope you have everything!!
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Old 09-28-2012, 12:37 PM   #2158
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Speaking of packing - I am most nervous about packing all of the medical stuff and dealing with the airport. I haven't flown since probably like the late 90's and had no medical stuff to deal with then and only one child. Cade's formula is powder, he takes 9 meds that are liquid, 7 that are not liquid - one of those is just his emergency solu-cortef which is shot (not in a pen device so we have the needles and stuff) but we have to carry that everywhere). We have his feeding supplies - he uses a feeding pump at night, but we do boluses during the day too. Do they consider pullup type things and booster pads medical (he's 10)? I always put the containers I use to premix his formula in with that bag too, but can I do that? I'll have his extra mickey button and stuff to replace it w/ in there too and a cpap machine. I just don't know how all of it is going to work. They are supposed to have an IV pole at GKTW for us b/c his feeding pump won't work without one. I don't want to be stressing about this, but I am....help!
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Old 09-28-2012, 01:36 PM   #2159
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Quote:
Originally Posted by Momtokcc
Speaking of packing - I am most nervous about packing all of the medical stuff and dealing with the airport. I haven't flown since probably like the late 90's and had no medical stuff to deal with then and only one child. Cade's formula is powder, he takes 9 meds that are liquid, 7 that are not liquid - one of those is just his emergency solu-cortef which is shot (not in a pen device so we have the needles and stuff) but we have to carry that everywhere). We have his feeding supplies - he uses a feeding pump at night, but we do boluses during the day too. Do they consider pullup type things and booster pads medical (he's 10)? I always put the containers I use to premix his formula in with that bag too, but can I do that? I'll have his extra mickey button and stuff to replace it w/ in there too and a cpap machine. I just don't know how all of it is going to work. They are supposed to have an IV pole at GKTW for us b/c his feeding pump won't work without one. I don't want to be stressing about this, but I am....help!
My son is 8 and uses diapers and pull-ups too. We are shipping them down to gktw separately so I don't have to haul a weeks worth on the plane. We are going to FedEx his non essential medical supplies so I don't have to worry about getting them through security. I'm sending the bulk of his pediasure down that way also. His meds and needles should have no problems as long as they are labeled with scripts.
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Old 09-28-2012, 01:52 PM   #2160
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Amy,
That just breaks my heart - I will pray for David and his family - and for you too since I know how heavy your heart is too. Hugs to you too...I know your heart is hurting as well.
Thank you so much.

Quote:
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Ok every one I need to pick your brains .. I know i packed every thing so far but what is the one thing that you forget to pack that u need ????
Hopefully, anything that we forget (Yes, I know I'll forget something!) will be able to be found at Wal-Mart. I have forgotten feminine products or extra diapers for E before. Thankfully, both could be bought elsewhere. Ibuprofen and bandaids, too.

Quote:
Originally Posted by Momtokcc View Post
Speaking of packing - I am most nervous about packing all of the medical stuff and dealing with the airport. I haven't flown since probably like the late 90's and had no medical stuff to deal with then and only one child. Cade's formula is powder, he takes 9 meds that are liquid, 7 that are not liquid - one of those is just his emergency solu-cortef which is shot (not in a pen device so we have the needles and stuff) but we have to carry that everywhere). We have his feeding supplies - he uses a feeding pump at night, but we do boluses during the day too. Do they consider pullup type things and booster pads medical (he's 10)? I always put the containers I use to premix his formula in with that bag too, but can I do that? I'll have his extra mickey button and stuff to replace it w/ in there too and a cpap machine. I just don't know how all of it is going to work. They are supposed to have an IV pole at GKTW for us b/c his feeding pump won't work without one. I don't want to be stressing about this, but I am....help!
I wish I could help here. I haven't had to deal with that and will only be dealing with mine and DH's RX meds. I planned on bringing some liquid meds (OTC) for E, just in case, but I might hold off and buy them if needed.

Since you said GKTW will have the IV pole, I guess you asked them for advice on the rest of the things you will need to bring? (as far as logistics) I'm sure someone will come along and help (I see someone already has!).

As for one of the things I'm thinking about...and this is SO not important...I'm trying to decide whether or not to bring my DSLR on the trip. It takes the best pictures but I'm worried about keeping up with it at WDW, especially on rides. We do have a point and shoot that's waterproof and shock proof but it really only takes good pix in daylight and the shutter speed isn't nearly as fast as the "big camera." Ugh. This is a trip of a lifetime and I don't want to miss things....but maybe not having my big camera will help me actually take more in....but then getting bad shots might make me crazy . I'm not a photographer at all..I don't even know how to work all the settings on my cameras (I know..sad, right?) but I'm working on it and my goal is to be proficient (or at least more advanced!) than I am now. Thoughts??

I haven't heard any updates on David today. I'm really hoping that antibiotic they put him on doesn't cause more harm than good...
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Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
Happy Wishiversary, Ethan!
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