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Old 07-23-2012, 07:35 PM   #31
sahm1000
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Meant to say this not his trip!

How long does it usually take for them to get back to you? I cannot imagine that Savannah wouldn't qualify for a trip. She is such a sweetie and her struggles are so great but she continues to persevere and is such an inspiration!
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Old 07-23-2012, 08:19 PM   #32
AmberGreenawalt
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Disney 2008 (Sebastian's Wish) Part 3

The next morning we met up with some of our favorite Disney characters right at Give Kids The World...







These pictures of Siennah and Belle just melt my heart. Once again she went running right into Belle's open arms...







We went to Islands of Adventure that day...



But rain and Savannah vomitting cut our time there short. Not to worry though because more magic was in store at the Give Kids The World Christmas Party that evening. Give Kids the World has a Christmas party every week but being that it was close to Christmas time they had an even bigger shin dig than usual. We had the good fortune to meet Pamela Landwirth, wife of GKTW founder Henri Landwirth.





Mickey, Minnie and Pals were there to light the Christmas tree and dance with the kids...





Cast Member chefs from the Disney restaurants came over and helped the kids decorate giant gingerbread houses and cookies…





We got to meet with fellow wish kid Lydia…


(They were all clad in awesome outfits by Tom)

And even Santa Claus...



Santa had toys for all the kids…



We ended the evening with a special tuck in by Mayor Clayton…




Give Kids the World is such an amazing place! We made sure to spend some time there the next day exploring.

The kids absolutely loved the carousel at the Castle of Miracles...





and the train at Amberville Train Station…



That evening we went to Mickey’s Very Merry Christmas Party…






The next day was our last in Disney. We headed to Epcot where we visited the various special lounges that are available to the wish trip families at Mission Space, Test Track and Spaceship Earth.



At each place the kids enjoyed refreshments and a neat behind the scenes look at the rides and then we were walked onto the ride via a special entrance. Here we are riding Test Track...



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Old 07-23-2012, 08:34 PM   #33
AmberGreenawalt
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Originally Posted by mrsksomeday View Post
I am so happy to read this PTR. I have been following your blog for over 3 years and just have to say you are a fantastic Mommy. The kids are so lucky to have you and Brian both.

Bill was so worried about me the other day, he was working and looked over at me - I was in complete tears . He didn't know I was watching Savannah's story. She has been through so much but hasn't let it get to her. She is so happy an the pictures of her and Finn just melt my heart.

I can't wait to read more. I am loving the picture of everyone on the laptops, too cute .
Yay! Yay! I'm so glad you subscribed Tracy! I hope our paths cross at Disney. That would be awesome.

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Originally Posted by DMGeurts View Post
I loved seeing all of your photos! The customs were all amazing - you did a great job on yours and all the others are just fantastic!

All of your kids are just precious! I love all their huge dimples! I admit I need to go read more about Sebastian's and Savannah's story - I know a little bit about Savannah because of Marianne, but I have not read anything. I will try to get to that asap!

Loving all your updates, thanks for sharing.

D~
You are quite welcome D. Thank you for reading along

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Originally Posted by maroo View Post
It really isn't possible, I don't think, for me to GRIN any more than I am now!

My face hurts!




LOVE the pictures!


I am so excited about all of the magic you guys got your trip! Awesome!!!!!
Just posted another one Maroo! And our last day at Disney (up next) was pretty magical too. In a small way this is like doing a little trip report. I have hundreds and hundreds more photos but this gives some idea of what a great week it was.

Quote:
Originally Posted by sahm1000 View Post
Meant to say this not his trip!

How long does it usually take for them to get back to you? I cannot imagine that Savannah wouldn't qualify for a trip. She is such a sweetie and her struggles are so great but she continues to persevere and is such an inspiration!
A little boy in our neighborhood who has the same exact diagnosis as Savannah has already recieved a wish and this past year when the Holiday giving campaign pamphlet came from Make A Wish it featured a child who has Mitochondrial Disease (I was SUPER excited because it brings great awareness for mito!). We've known since early on that she would qualify but it's a matter of getting her mito specialist who is 3 hours away and one of the only ones in the state (making her very busy) to sign off on her paperwork. With Sebastian's wish it took less than a week from the time that he was reffered to when we heard from Sebastian's Wish Granter's that they would be granting him a wish. BUT Make A Wish here also told me that they work with Blume Hematology and Oncology Clinic all the time so I'm thinking they have the process with them down pat. We continue to pray that great things will happen for Savannah too.
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Old 07-23-2012, 09:32 PM   #34
AmberGreenawalt
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Disney Trip 2008 (Sebastian's Wish) Part 4

Next we hopped over to the Magic Kingdom via the monorail. We got to ride up in the very front...



We took in Cinderella's Castle with our brave, brave boy...



The Wish lounge in the Magic Kingdom provided the perfect place to take a break and nurse Savannah. The staff there was incredible to us. It started to rain while we were there and one of the Cast Members brought our family a set of Disney Ponchos.





Since it was our last day at Disney we asked Siennah and Sebastian what one thing they each wanted to do. Siennah really wanted to meet the Princesses Sleeping Beauty and Cinderella. She had been very patient all week waiting to see them. All Sebastian wanted to do was get to see Buzz Lightyear one last time. So made our way over to see him in Tommorowland.

But when we got there we were informed that he had blasted off to outer space. We waited and waited for him to return but he didn't come out. We were running out of time to go see Siennah’s princesses (Cindy, and Aurora). An awesome Manager CM noticed our predicament and made some quick arrangements. First they whisked us over to the see the Princesses...





AND then they took us in to see Tinkerbelle and the Fairies Iridessa and Silvermist. This was right after the Pixie Hollow Meet and Greet opened in Toon Town...





Next the team of CMs took us behind the scenes to the part of Disney that guests don’t usually get to see. It was super exciting to us! A driver named Mike came to pick us up and we loaded into a very nice van. Mike narrated our drive with all kinds of information about the operations of Disney and such. He was awesome! Here we are in the behind the scenes area of our destination Hollywood Studios...



Sebastian got to say goodbye to his hero Buzz afterall. Just look at his face upon seeing him!...



It was amazing! We were overwhelmed by all the unexpected magical moments that happened all week and this was just the icing on the cake. Disney bent over backwards to make us feel special. I will treasure this exchange between Sebastian and Buzz forever...





A manager over in the Pixar area then walked us all right onto Toy Story Midway Mania ride and she and Mike rode with us twice!





Siennah's face captures how we all felt!...



They gave the kids pins and ooohed and ahhhed over Cathy's beautiful Toy Story outfits...





Mike then drove us back to our van that was parked at Epcot. The kids had fallen asleep on the short drive all tuckered out from their amazing last day at Disney...



We transferred to another hotel and over the next two days visited Universal and Sea World. It was a great deal of fun but nothing compared to Disney for us.

The kids saw Barney...



and got giant swirl lolli-pops while we watched the Macy's Holiday Parade at Universal...



At Sea World the kids got to feed and pet the dolphins for free…



and after the Shamu show Sebastian got to meet the trainer…



On our last morning we had breakfast at Chef Mickey’s…



And then we took one last ride on the Monorail around Walt Disney World before heading to the airport. When we got home our Wish Granters greeted us at the airport with welcome home signs.



From start to finish it was an incredible trip! Soon Savannah would be in the hospital again and our medical misadventures would continue. But we will always have this special week to look back on and we had discovered the powerful hope that having a trip to look forward to gave us. So much so that a month after Savannah was diagnosed with Mitochondrial Disease in 2009 we would return to Disney. Photos from that trip up next.
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Old 07-24-2012, 06:42 PM   #35
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i love all the pictures. in the first trip at mickeys backyard bbq you already had a jump start on the awesome coordinated clothes, and to see how little sebastian and siennah were, absolutely awesome. then the wish trip pics I just love to see them all and the magic that disney made happen was amazing. thanks for sharing, cant wait for the next go round . i'll have
some while we wait for the wish granting
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Old 07-24-2012, 07:32 PM   #36
mrsksomeday
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Amber, from seeing Siennah run to Belle, Savannah with Tink and the look on Sebastian's face seeing Buzz I am a puddle of tears again. So amazing that they would take you to DHS to make sure Seb got to see Buzz. One of the many reasons I love Disney, they go above and beyond to keep the magic.

Those pictures should be in WDW's ads.

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Yay! Yay! I'm so glad you subscribed Tracy! I hope our paths cross at Disney. That would be awesome.
We booked BWV today for Feb. 20 - 26 and we hope you are there at that time. Today I was telling Bill how many DISers will be there when we are he said "what about Amber, are they going to be there too?" I told him hopefully and his face lit up. Your family holds a place in our hearts even though we have never met you, all of you have deeply touched us with your love and your faith, it's amazing.
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Old 07-24-2012, 07:48 PM   #37
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I am overwhelmed with emotion! Speechless. What a trip and the kids faces and all that you got to do....just soooo soooo magical. I love the pictures and I hope to make a few new sets for Savannah's very well deserved trip!!!!



I would just like to say to everyone reading this that Amber is like my hero. She is unstoppable! She is so smart and talented and obviously, her and Brian, are the best parents!!!! They are raising three incredible children and it is such a blessing to be part of their lives.


I wish you all many blessings on this Wish Trip!!!!
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Old 07-25-2012, 05:08 PM   #38
AmberGreenawalt
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Quote:
Originally Posted by maroo View Post
It really isn't possible, I don't think, for me to GRIN any more than I am now!

My face hurts!




LOVE the pictures!


I am so excited about all of the magic you guys got your trip! Awesome!!!!!
I just went back through and read and looked at the photos and I'm a puddle. Really was special. I'm glad you enjoyed it too Maroo!

Quote:
Originally Posted by kimmylaj View Post
i love all the pictures. in the first trip at mickeys backyard bbq you already had a jump start on the awesome coordinated clothes, and to see how little sebastian and siennah were, absolutely awesome. then the wish trip pics I just love to see them all and the magic that disney made happen was amazing. thanks for sharing, cant wait for the next go round . i'll have
some while we wait for the wish granting
I'm working on 2009 next!

Quote:
Originally Posted by mrsksomeday View Post
Amber, from seeing Siennah run to Belle, Savannah with Tink and the look on Sebastian's face seeing Buzz I am a puddle of tears again. So amazing that they would take you to DHS to make sure Seb got to see Buzz. One of the many reasons I love Disney, they go above and beyond to keep the magic.

Those pictures should be in WDW's ads.

We booked BWV today for Feb. 20 - 26 and we hope you are there at that time. Today I was telling Bill how many DISers will be there when we are he said "what about Amber, are they going to be there too?" I told him hopefully and his face lit up. Your family holds a place in our hearts even though we have never met you, all of you have deeply touched us with your love and your faith, it's amazing.
Aw thanks Tracy! Pleas keep your fingers crossed that we hear back from MAW and that we can get the dates we'd like. I'd love to meet up with you and Bill!

Quote:
Originally Posted by twob4him View Post
I am overwhelmed with emotion! Speechless. What a trip and the kids faces and all that you got to do....just soooo soooo magical. I love the pictures and I hope to make a few new sets for Savannah's very well deserved trip!!!!

I would just like to say to everyone reading this that Amber is like my hero. She is unstoppable! She is so smart and talented and obviously, her and Brian, are the best parents!!!! They are raising three incredible children and it is such a blessing to be part of their lives.


I wish you all many blessings on this Wish Trip!!!!
Cathy, this post totally made me tear up AGAIN....I know I'm a mess. But thank you for all your kind words and for sharing your talent with us. Can't wait!
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Old 07-25-2012, 06:06 PM   #39
AmberGreenawalt
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2009 Disney Trip

As I mentioned in my previous post, we came home from Sebastian’s Make A Wish trip in December and not too long after Savannah went right back into the hospital. Pretty soon into 2009 we realized that we needed something positive to set our sights on again. So we decided to take advantage of a free dining offer and book a trip to Disney with the Martinez family for September. Rey and Ashley Martinez are Savannah’s godparents. When Savannah first went into the hospital it was the day after she was baptized. The Martinezs had come up from Florida for the Baptism and Sebastian’s Wish Celebration and they ended up going to see doctors with us and watching Sebastian and Siennah while we were at the hospital with Savannah. (The story is in Sebastian's PTR actually)

In June we took Savannah to Atlanta for a muscle biopsy and extensive testing with one the leading Nuerogeneticist diagnosticians in the World. It would take weeks to get the results back from this testing so I decided to take the kids down to Florida and hang out wish Ashley and her kids to get my mind off the anxiously awaited results.

It was just a few short weeks before our September Disney trip that I opened my email and read words that completely changed our lives yet again.
“We have excellent criteria for the diagnosis of Mitochondrial Disease.”

I cannot begin to tell you what a blessing it was to have the Disney trip on our horizon. The timing could not have been better as it provided the prefect distraction for our hearts that were still raw with grief at this new life-changing news. This Disney trip, just as the one in 2008 was beacon of light and positivity in the rough seas that we had been sailing.

Here are some of my favorite memories from that 2009 trip…

We stayed at Coronado Springs Resort. I did my Sterlite way of packing for the first time at Disney. It was a great success!...





The Martinez and Greenawalt crew were quite a sight with our gaggle of 4 adults and 6 kids in coordinated outfits with 4 stollers! Here were are on our first day at Hollywood Studios...





Siennah at three was in heaven at Disney. I loved her in the "punk" Minnie outfits I made...



Savannah too, was a doll. Here she is at Animal Kingdom.



I made the same animal print outfits again for everyone…



I love this photo from the one and only time we've taken the kids on the Dinosaur ride. It is, in my opinion the most scary ride at Disney…



Sebastian and Mason…



Our pack of wild animals...



Savannah ready for a day at the Magic Kingdom...





Her face lit up riding Dumbo!…





Siennah on Cinderella's Golden Carsouel...



The way she called the monorail the "motor-ater"...



Bright orange outfits you could spot easily in a crowd...



Dinner at Cystal Palace…



Husbands that are SUCH great sports to wear whatever custom I made without complaint and always willing to get silly. Here are Brian and Rey jumping rope as we wait for the Spectromagic parade...

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Old 07-25-2012, 09:06 PM   #40
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Which is more beautiful:

A - the kid's smiles
B - the wonderful outfits
C- the way you celebrate life
D - who am I kidding...it's all the above!

Can't wait for more!!
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Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23
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Old 07-25-2012, 09:31 PM   #41
AmberGreenawalt
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2009 Disney Trip Part 2

Here we are in our traditional Incredibles shirts…



They worked their magic again because we all got chosen to dance in the Pixar parade…



Our Incredible girl…



We loved the Mayan Pyramind pool at Coronado Springs…





It was the first time we ate at Ohana and I thought I had died and gone to heaven! Mmmmm



Here we are on our second day at Animal Kingdom. I loved the polka dots!...



Siennah on safari…



We had lunch at Cinderella's Royal table. Amazing. Here is our little our Princess Savannah…



We celebrated Ashley’s birthday at Chef Mickey’s…







Here we on our last day all together at Epcot…



Siennah chowing down on a churro…



We nabbed at last minute reservation at Garden Grill because it was the only restaurant that had availability. We had no idea it was going to be so great!...



All tuckered out from another great trip to Disney...

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Old 07-25-2012, 09:57 PM   #42
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Originally Posted by carebearkidney View Post
Which is more beautiful:

A - the kid's smiles
B - the wonderful outfits
C- the way you celebrate life
D - who am I kidding...it's all the above!

Can't wait for more!!
Thank you so much! I just subscribed to your PTR in your siggie and read up. Gorgeous boys!!! So excited to get to know your sweet family and follow along with your plans I hope you get that call soon! Fingers and toes crossed for both Savannah and Matthew!
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Old 07-25-2012, 10:21 PM   #43
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More pictures!

And thanks for following our trip! Yes, fingers, toes, and sometimes eyes (depending on the day and how many doc appts!) are all crossed!
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Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23
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Old 07-26-2012, 09:48 AM   #44
DMGeurts
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Amber... I just love seeing all these pictures... Such wonderful memories in these trips, and so wonderful that Disney sprinkled your family with pixie dust a few times. Thank you for sharing with us!

D~
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Old 07-26-2012, 01:18 PM   #45
carebearkidney
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DMGeurts - just had to say I'm in LOVE with all the Donald in your siggie!
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Karen (the momma) Ian (the daddy) William - 6 (the Cars boy) Matthew - 4 (the all out Disney NUT)

Our MAW PTR
To Kidney - and Beyond!

Our kidney-versary trip - celebrating one year anniversary of kidney transplant!
kidney-versary trip 2011

Kidney-versary trip 2011
MAW trip Feb 17 - 23
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