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Old 03-06-2013, 05:10 PM   #3466
NEmel
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Originally Posted by Sheri21596 View Post
Hi everyone! This has been a busy week! Kara did great taking her first dose of her oral chemo for her first cycle. I did recieve a punch in the eye on the last night when waking her up. She is a fiesty one! We get a break until March 20th - then we go back to Hopkins for IV treatment and this will be the first time her port is accessed. A little nervous about that!

I hope everyone is doing well and that their planning is going good! Im excited to read and can't wait to see more pictures and hear more plans!

I also wanted ask some advice about the wish process. I was wondering how long did it take for some of your children's wishes to be offically granted?
So glad Kara did ok. Hope that the IV treatment goes as well.
We first met with our wish granters in Oct and found out dates in Jan.
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Old 03-06-2013, 05:13 PM   #3467
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1 month from now we will in in Orlando!!! It is coming so fast. Haven't really gotten to do to much this week. My 90 grandma is very sick and in the hospital so been busy with that. Hope everyone is having a good week, hoping to get some pics posted on Carter's PTR soon.
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Old 03-06-2013, 06:32 PM   #3468
Sheri21596
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Hi Jackie- I have been thinking of you guys too! How is your Kara and her ear doing? I am excited to see more about the Star wars and my oldest is too! He loves star wars! I hope we get our aproval soon! It will be a month on Sat. Im sure it will be soon. I would love to plan it! We are hoping to get the dates around Kara's birthday!

Melissa - I hope everything is okay with your grandmother! Also can't wait to see more of Carter's wish. I would love to go on a cruise!
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Old 03-06-2013, 11:57 PM   #3469
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Britney - Yay for staying at POFQ on your extension Be sure to try the Beignets.

Sheri - So glad that Kara did well. Praying for the IV treatment. Ooo, about your eye. We met our wish granters in Dec., and were told her wish would be granted 2 1/2 weeks later. We just got our dates last week, but that was because of complications on our end, so I'm not sure how much earlier we could have known, but it was at least 2 weeks sooner.

Yay Melissa It is coming fast So sorry about your grandma Praying for her.
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Pretrip Report: Angel's Make a Wish Cruise on the Dream /and extended days at WDW PTR :We have dates 4/13-25
Trip Report: Angel's Make a Wish DREAM Cruise & extended days at wdw: April 13-25, 2013

Previous trips: 2013 Apr. 18-25 2010 May 8-15 2009 Dec. 4-11 2008 Dec. 15-24 2008 Aug. 30-Sept 7
2007 Sept. 1-8 2006 Dec. 9-16 2006 Sept. 26-Oct.3 2005 Sept. 25-Oct.8 2004 Dec. 11-21 All at POP
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Old 03-07-2013, 10:08 AM   #3470
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Quote:
Originally Posted by Sheri21596 View Post
Hi everyone! This has been a busy week! Kara did great taking her first dose of her oral chemo for her first cycle. I did recieve a punch in the eye on the last night when waking her up. She is a fiesty one! We get a break until March 20th - then we go back to Hopkins for IV treatment and this will be the first time her port is accessed. A little nervous about that!

I hope everyone is doing well and that their planning is going good! Im excited to read and can't wait to see more pictures and hear more plans!

I also wanted ask some advice about the wish process. I was wondering how long did it take for some of your children's wishes to be offically granted?
It will all depend on your Wish Chapter & Volunteer when it will get started, Your volunteer will come to your house & ask the wish child what they wish for, they will ask for aleast 2 different wishes, just in case one can not be fulfilled. They might also ask the child to draw a picture of their wish. Once the wish is given, depended on the time you give & the wish will decide when it will happen.
My DD's name was given by her Doctors at the age of 2 but she had to be 3 before she could go on the trip, the NP told me at a Doctors Appiontment that Brooklin was chosen & that someone will be calling for info in a few months. Someone called in October but I did not get to talk to a volunteer until Febuary, 2 months before her 3rd birthday. We picked the months of April & May, any week, we got the info by the end of March, we went the second week of May & was able to stay at Give Kids the World.
If there is anything special that your DD wants to do, make sure you tell the volunteer so they can help you plan it, like BBB or a Character Breakfast.
If you have any ?'s, you can message me or post here, I check back every few days.
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Old 03-07-2013, 10:15 AM   #3471
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Is there anyone here, whose child has Evans Syndrome? I am just looking to connect with someone that has a child with the same illness my daughter has. Her illness is an Autoimmune disorder, her white cells & red cells & retic is affected, she is not having trouble w/her platlets.
I have found other families affected with the platlets only, but I have yet to find anyone with my DD's type of illness.

If you are out there, give me a shout, I would like to talk to someone who understands.
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Old 03-07-2013, 02:42 PM   #3472
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Question about fireworks...where can we watch them and still be a good distance away? My son, Nate has had seizures from fireworks, so we have to be careful. If we're far enough away and constantly distract him, he's ok.

Kristy
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Old 03-08-2013, 01:37 AM   #3473
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Quote:
Originally Posted by NEmel View Post
1 month from now we will in in Orlando!!! It is coming so fast. Haven't really gotten to do to much this week. My 90 grandma is very sick and in the hospital so been busy with that. Hope everyone is having a good week, hoping to get some pics posted on Carter's PTR soon.
Yay!! It is getting close! I can't wait to hear all about your magical trip! Praying for your grandma.

Quote:
Originally Posted by Sheri21596 View Post
Hi Jackie- I have been thinking of you guys too! How is your Kara and her ear doing? I am excited to see more about the Star wars and my oldest is too! He loves star wars! I hope we get our aproval soon! It will be a month on Sat. Im sure it will be soon. I would love to plan it! We are hoping to get the dates around Kara's birthday!
Kara's ear seems to be doing pretty good right now. We go in May for a pre op for surgery number 2. We are not sure how much hearing loss she has at this point but will find out more in May. Praying for know more growths and they can reconstruct her hearing bones. If they find more growths they will take those out and she will have another 6-9 months later. Her surgery will be sometime this summer. Not sure if we should do it right after Trev's wish trip the middle of June. Summers do not really start around here until the middle of July anyway. Or should we wait until the end of August? Part of it depends on when Kindergarten testing for early entrance is too.

I hope you get your approval soon too and you get the dates you want! That would be so much fun to go on her birthday!! I always wanted to go to Disney for my birthday... I'll miss it by a couple days this time but I already asked Trev if we could celebrate it while there and he said yes

Even though I don't know a lot about Star Wars nor am I really a fan I am excited to see what it is all about too

Jackie
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Old 03-08-2013, 02:30 AM   #3474
KWATKIN3
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Waiting for our wish granters and soooo excited

I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!
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Old 03-08-2013, 05:53 AM   #3475
NEmel
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Quote:
Originally Posted by KWATKIN3 View Post
I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!

Welcome!! So glad Hayden is getting a wish. All of the Disneyworld trips sound amazing and I'm sure you will have an amazing time. Can't wait to hear more!
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Old 03-08-2013, 07:42 AM   #3476
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Quote:
Originally Posted by KWATKIN3
I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!
Welcome! You'll find LOTS of great info here. I've never been before, so can't help you with tips. Looking forward to following your story. :-)

Kristy
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Old 03-08-2013, 08:55 AM   #3477
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Quote:
Originally Posted by KWATKIN3 View Post
I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!
Welcome! So happy that Hayden gets his wish. Disney can be very hot, even in late Spring. You could definitely see temps into the 90s even in April or May. We've seen extreme temps in pretty much any month between April and October. Add in the humidity and it can be VERY hot. My daughter can't be in extreme temperatures either (cold or heat), which makes a trip to Disney hard. Does your son have a cooling vest? We found that they can help. This board is wonderful ... have fun planning on here!
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Old 03-08-2013, 10:38 AM   #3478
2012bella13
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Quote:
Originally Posted by KWATKIN3 View Post
I am a very proud mother of an amazing 7yo boy Hayden with a rare genetic disease adreanoluckodystrophy. We were blessed before he was even born more less born to us with all his perfections. Hayden is lucky because we found out from the time he was born he has this awfull disease which gives us a fighting chance for him. Most children do not find out till it is to late and they pass away with a horrible death that did not come with a fighting chance.
Hayden has been referred to make a wish, accepted, his wish granters assigned and now we are waiting to meet them on march 24th. He of course when we asked him what if anything in the world he could wish so big for and he said to go to disneyworld. I am now so thrilled after reading so many amazing stories and blogs and cannot wait for this whole process to unfold. We are hoping to go in late spring. Hayden cannot be in the extreme heat because it does not prodouce electrolytes normally. (I am a terrible speller)

Any suggestions for this trip to make it flow easy and to make sure his every whim is met please indulge us with your knowledge!
You might want to think about the month of April if you are going this yr, We went in May 2011 for my DD wish & it was 96 degrees everyday, we spent most of our time at the pool & townhouse at GKTW Village because it was to hot for her.
We went back this yr for a return visit just last week, the weather was nice, 80's & the last 2 days 60's had to wear a jacket, we enjoyed it very much, not to hot.
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Old 03-08-2013, 10:52 AM   #3479
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If anyone can get to the parks early before rope drop, some special things might happen!
We went to Animal Kingdom early, & was at the section Camp Mickey & Minnie & Brooklin was picked to open up Camp Mickey & Minnie, she raised the Camp Flag, had a private M&G w/ Chip & Dale & was first to see Mickey.
She also had VIP seating at the Lion King Show.
We went to Magic Kingdom early, was the first ones standing at a turnstile, (not the one for Breakfast Reservations & Tours) & We were picked to be the Opening Family of the Day, We got to get in the park early with a CM, she took us around took pictures & when the train came, we were introduced to the crowd along with Mickey & Friends & opened the park.

This was a great trip, Brooklin also went back to Give Kids The World to see her star.
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Old 03-08-2013, 10:18 PM   #3480
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Hello,
I am new to the board. I came across this board trying to find information about an upcoming disney trip through MAW. My dd was granted a wish for disney world. I am a big planner. Thing only thing i have been told is that my dd trip will be in april. We have never been to disney so I do not know what to expect. What will the weather be like? What do i need to bring with us? How much money should I save? Should i take her wheelchair or her medical stroller? Sorry for alll the questions, I am a person that likes to know about everything and in this I know nothing lol.
Welcome to the DIS!

I am so glad you guys have been granted a WISH!

Reading this tread - looking through Trip Reports - will give you a great idea of what to expect.

I think every trip has a very magical moment with the family - most are simple moments spent together as a family that stay with you forever and ever and ever!

Are you guys going as a guest of GKTW? Most of the trip reports here are from families that stayed at GKTW or through GKTW.

Money - save as much as you can - and bring it with you - just in case you find something you want to do that you don't quite have enough budgeted for - and if you save too much you can always use it later!

If you bring a stroller - when you get to Disney, go to Guest Services and ask for a "Stroller as a Wheelchair" tag - that will allow you to bring the stroller wherever a wheelchair can go in lines, buildings, etc.

There is a TON of information on this thread and the previous 4 threads including all of the TRs that you could spend DAYS and DAYS reading them all!

Quote:
Originally Posted by Kirlinale View Post




Firstly - don't give a hoot what ANYONE thinks..

I've been to WDW and DL 7 times since Kira was born.. She was 4 months old our first trip... Just a quick medical orientation - Kira has a brain tumor, epilepsy (intractible due to unreated cortical dysplasia) Completed 2 1/2 years of chemo when she was three - Crainiotomy (open brain surgery) when she was three when her Brainstem tumor was determined to be inoperable. Has had numerous hosptial stays in ICU for status seizures - some lasting weeks - Has at least one seizure a day to 100's depending on day - takes 4 seizure meds w/ moderate control - is in surgical review for possible removal of the dysplasia - She is also developmentally delayed, has some physical disabilities as well as some behaviour - That's just the short list...

That being said - Her needs change daily - sometimes she needs a wheelchair , sometimes not, sometimes she looks and appears totally typical and sometimes not... We have had varying issues at WDW w/wheelchairs and strollers so I will try to help you best I can ...

When she was an infant - this was not an issue...

When she was three - we used a regular stoller but got a 'stroller as a Wheelchair' tag for her - we also had an umbrella stroller for those 'good' days and getting around to short trips to downtown disney, dinner, the resort...

Our next trip we took our McClaren Special needs stroller chair - This was good but it did not allow for her to rest a it only had a slight recline. It was light and easy to use - and had no problems with Gate Checking it.. This was the easiest one to use - but at the same time - got a lot of questions from CM's as to whether or not it was a 'Wheel Chair' which got annoying .

The next two trips we took an umbrella stroller for the quick trips around resort , dinner etc.. and her Safari Tilt in Space (my all time favorite chair) - however, the Safari is a pain in the butt to lug around did not fit easy in the trunk of rental cars - and we did not by the carrier case for it so it got banged up gate checking it - BUT having something that FULLY reclined was more valuable - Kira needed to rest , especially after seizures - which with any other chair would require us going back to a room or lounge .. having her able to sleep in the chair allowed us to stay and enjoy our time.. BUT it was a pain to manuveur through the crowds when reclined.. and it was very big to handle... If she was smaller I would have rented a Jogging Stroller which would be easier and give more shade and storage - plus you would not risk the airline issues or having to lug it all over.. I know MAW can help secure rentals ...

Our last is the Convaid Cruiser Meto - Which I have now and I love .. it's light, easy to use , and comfortable - but does not recline.. which I miss... she no longer fits her safari so we donated it and I am now looking at other options...

Kira has had good days and bad at WDW and DL and it was totally necessary to have options...

If I were to do it again -

I would bring the lightest , easiest chair you can .. McClaren type or Convaid ... Rent a Jogging Stroller (two seater if you can so you can put a pillow and some extra stoage ) With the MAW Gac and Stroller as a WC tag you should have no problems.. At the airport having a light stroller a blessing and a cheaper one incase of damage... We have used the accessible in airport transportaion (golf carts) for the bad days - used the light chairs for the good ones..

For our MAW trip ... We are going on the Disney Dream - then a few days a Universal (extention) .. was going t do Disney parks but our older kids want to go to Universal and it's better on my wallet...

I am taking her Metro Chair for the Cruise , airports and light travel. I am looking into renting a reclining chair or larger chair for the universal part of the trip ..

If your child is small enough a Wagon could work out well too...

HAve a great trip!!!
Nicole
All very good thoughts!!! Glad you are here - have fun on your trip!

Quote:
Originally Posted by esbelcher99 View Post
We are going on our MAW trip the last week of march. We are staying at the Animal Kingdom Resort, not GKTW. My question is, will we still be eligible for the same perks inside the park as the gktw families. Also, will we be able to visit gktw?
Is it "through" GKTW? If so, this is what we did - if it is through GKTW then you are a guest of GKTW even if you are on site, so you can go to GKTW and eat, etc...

Quote:
Originally Posted by blessedmom4 View Post
Maroo, I PM'd you a while back that I FINALLY finished Lisa's TR (Just have a few tidbits I want to add). I think you have Lisa's PTR linked, but not our TR, if you want to add it for me. THANK YOU from tthe bottom of my heart for ALL you have done for so many wish families!

I want to say WELCOME to all of the new wishtrippers I haven't had a chance to say hi to and invite you over to my newest thread "Oops, She Did It Again." There is a party going on to celebrate my Princess' TENTH birthday! Come on over, say hello and join in the fun. EVERYBODY is welcome both old friends and friends not yet met!
You did a fantastic job on your TR! I linked it and put "FINISHED" on there tonight! Sooooooo sorry I had not done that yet!
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