Discussion in 'Pre-Trip Reports and Plans' started by AmberGreenawalt, Jul 11, 2012.
Looks like she had the perfect princess party! She is absolutely beautiful!
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This is soooo me, and totally made me ROFL.
Exactly! You put that so well Amber.
I loved seeing all the pictures, I was watching the live updates on FB, and it looks like everyone had so much fun! You did a great job!
What a beautiful party! What a beautiful family,what wonderful smiles, fingers crossed for a well deserved wish trip!
Good morning! Tell the princess that Prince Charming is less than 2 hrs from home
That birthday party was amazing!!
And your letters to your kiddos - and the videos - make me cry EVERY SINGLE TIME!!!!!
But they are happy tears! I am so happy to see her walking around! I remember when you were not sure that was ever going to happen! You guys have come a long way!
Thank you for all of your kind words about Savannah's birthday party.
We still have not heard anything from the Make A Wish Foundation. One of my good friends who is an oncology nurse reports that our chapter is waaaay behind on wishes.
Unfortunately we've approached the 6 month mark. Meaning we are nearly 180 days out from the dates we would like to go. February 23rd-March 4th (our kid's school vacation week.) If you are a Disney nut then you can appreciate what that 180 days date means in terms of planning.
We are going to go ahead and book what we were hoping would be the extended portion of our trip (March 1st-4th) and will start making ADRs daily on August 28th. Since we won't have a reservation number yet we can't do the start of our trip "plus ten days." I can only make ADRs for one day at a time as each day becomes "180 days" out. I'm hoping things like pre-park opening breakfasts are not all snatched up by the "plus ten" crowd. Thankfully free dining hasn't been released during this period so that could be on our side as any free dining period is notrious for thin ADR choices.
I'm going to book a Cinderella Dinner and Bibbity Bobbity as these are things Savannah would love to do on her wish trip but like I said I don't know if it's going to get to be a wish trip.
If the trip doesn't end up being Savannah's Make A Wish then we will need to make a reservation at some other hotel for February 23rd-March 4th. We'd probably try to use some Hilton Honors points staying at one of the downtown Disney hotels or rent some more DVC points from someone else if we can get them cheap enough. We're only booking 3 nights for the extension and it's not worth it for us so travel down to Orlando and try and speed through the parks in that time.
I don't like booking with such uncertainty but know that we need to do something as rooms that "sleep 5" for relatively less money on property go fast. One of the places we are looking at booking is Bay Lake and all they have left are the upgraded Lake View. I am nervous because once we pay for DVC points rental the money is non-refundable. The dates could be changed up until the end of June (the DVC owner's use year end) but the points once bought are...bought.
Please send up a prayer or two that we hear from Make A Wish SOON and that we can get the ball rolling. I'm feeling really discouraged.
On a happy note... We participated in the Charlotte Disboutiquer Meet this past weekend. On Saturday we had a "Fabric Shop Hop" where we visited several area fabric and thread stores and also enjoyed lunch together. Then in the evening we met up at a place called Lake Wylie Bowl and Bounce. Most of the gals did an American Girl outfit exchange. It's unbelievable how talented these ladies are!
I LOVED getting to meet some long time friends for the very first time in person. Some of them have been a part of our life since making outfits for Sebastian's Big Give and it was because of their amazing outfits that I was inspired to get into sewing myself. These women have watched Savannah grow up from the time I first posted pictures of the day she was born on Sebastian's PTR. It was really cool to see how much their children have grown too. I also LOVED making new friends! A few live not to far from me at all. It's great to know that other Disney custom sewing nuts are nearby!
Here are some photos of the great group of Disers that met up in Charlotte...
Amber it was so great to meet you. Your children are adorable, sweet, loving. Well I could go on and on. The letter you wrote to Savannah is the sweetest thing I have ever read. Your parties well all I can say is WOW!!! Oh and will you help me with Karly's in November I really hope you hear something soon about the wish trip.
Amber, It was awesome to get meet you and your beautiful children Saturday! I've followed your blog for a while now, since Marianne posted the link. I will be following along for Savannah's PTR and I hope that MAW gets back to you soon.
I had Savannah at her Pediatrician's office on Friday and her doctor said she had not yet recieved any forms via fax (or otherwise) from Make A Wish. What gives?!
It was over THREE weeks ago that I had called (and followed up with an email --that got no response) to give them Savannah's Pediatrcian's office number and fax number.
We are going on three months now since our initial contact with Make A Wish and the eligibilty forms have yet to make it into the hands of her doctor --who is more than willing to sign them!
Should I call again???
I hate to be a pain in the you know what but man, this is discouraging.
Meanwhile, Tuesday is 180 days from when we plan to go to Disney.
We have booked what we hope will be the extension to the Make A Wish trip from March 1st - March 4th in a one bedroom at Bay Lake Tower. I am renting DVC points from a friend of a friend. The gal that we purchased them from used to volunteer every Thursday at Give Kids the World while she was in the Disney College Program. This really warmed my heart.
Our plan if we never hear back from Make A Wish is to use Hilton Honors points to stay at one of the Down Town Disney Hilton brand hotels (Double Tree or Hilton). Don't know how long we should wait before making that reservation.
Praying, praying, praying...
I'm hopping aboard; so glad it's at the start of the ride!
All your kids are so sweet; I just want to eat them up!
Good luck with your ADRs next week.
I LOVE your customs for Disney! The birthday party was so cute! I know the kids had so much fun.
Amber, I am hoping you hear from MAW very soon!!
Your posts have made me cry today!! I can't believe it's been 4 years since I first "met" you! You guys are such a special family and I have loved looking at all the pictures of your Disney trips. I can't believe how the kids have grown.
Thank you for sharing with us! I hope you get good news about your trip very soon.
It will all come together . . . the pieces are just taking a little longer to fall into place than we'd like
What an amazing family! I've only made it as far as Sebastian's wish trip photos but, my goodness, do you ever have adorable kiddos!
I've laughed and cried and I'm not even halfway through this thread!
Amber... Any news yet?
I've been hoping that you all hear something soon... It will all come together!
I am also hoping to meet up with you and your wonderful family while we are down there.
I just wanted to see if there was any updates.... for good luck!
Just checking in...hope no news is good news! Can't wait to hear an update from you!
I have a four year old little one with Mito as well. We just got our dates for Disney...Jan 3-9... Our maw chapter was way behind too we were told!
Wondering if you guys have gotten any news?
After months of waiting through the wish process we received some very disheartening news in a letter from Make A Wish. It read
"Make A Wish of Central and Western NC has concluded that her [Savannah's] condition does not meet the medical qualifications for a wish. We regret that we are unable to fulfill a wish for him/her."
There is so much I am still having a hard time processing about this. In all honesty, Savannah has, in her little life, been through just as much, if not MORE than her big brother Sebastian who qualified for a wish because of his battle with Osteoclastoma in 2008. All of Sebastians referral stuff was handled through the Blume Hematology and Oncology clinic which Make A Wish admittedly deals with all the time.
Honestly the disparity between the cancer world and mito world sometimes makes my stomach turn. Mitochondrial Disease is a life-long battle. Kids with cancer have a chance at remission. I'm not putting down cancer because I know what they go through IVE HAD ONE! Cancer automatically qualifies a child for wish
apparently Mitochondrial Disease (having just as many children affected and an equally grim prognosis) does not. 80% of children with Mitochondrial Disease will not survive their teenage years.
We did Sebastians wish trip when we considered him to be healthy and by and large in the clear---as a sort of celebration for that really. Savannah has been in and out of the hospital and doctors offices since birth
the beginning of her story played on here on the DIS Boards in fact. Savannah continues to be affected by mitochondrial disease, not to as extreme an extent as she has been at the present moment but it will continue to be a part of her life as long as there is no cure. Just last week I had to pick her up from school because she was lethargic and unresponsive.
Conscious of the prognosis for anyone with Mitochondrial Disease we wanted to do something for her NOW
while she is healthy enough to enjoy it and because she clearly has something she wants to wish for as she is utterly enamored with Princesses and weddings and we dont truly know if she will get to have a real wedding someday. Just a few days ago a beautiful young bride named Leslie who has Mitochondrial Disease died.
The reality is just because Savannah is "stable" in her disease today does not mean she will be tomorrow. It is a progressive disease with no cure. Make A Wish asked that we contact them again if Savannahs condition takes a turn for the worse. How the heck do they expect her to go when she is worse? There's no way Savannah could go on a trip mid-crisis. I am so disappointed for Savannah and for all the other children denied for simply not being visibly sick enough.
The criteria for the NC Chapter of Make A Wish states "A child who is between the ages of 2 1/2 and 18, and who has been diagnosed with a life-threatening medical condition is eligible for a wish." ---I don't know what they think that means. Or how it is that Savannah does not qualify by this criteria.
I had been encouraged last Christmas when a letter arrived from the Make A Wish Foundation for the annual giving campaign that featured the story of a ten year old boy with Mitochondrial Disease. I thought that maybe some parity was starting to be seen between kids with mito and other life threatening illnesses. In our neighborhood another child with the exact same diagnosis as Savannah had his wish granted through MAW.
We started the process for Savannah back in June. Not one but TWO of her doctors sent in complete paperwork for her though MAW claimed for months to be waiting on three missing signatures even though her doctors repeatedly let Make A Wish Know that they were willing to provide whatever information they needed. I talked with them both on multiple occasions when we had Savannah in to see them and both were so gung ho and excited to make a wish happen for Savannah.
One of Sebastians wish granters requested to be matched with our family again
meaning that someone was ready, waiting and willing to provide the volunteer man hours needed to make a wish happen for Savannah.
For months the two of us tried to talk to someone at Make A Wish just to see where we were in the wish granting process
NO ONE would return ours calls. Or worse they would email saying they were going to call
.and then never call. The would-be wish granter did get through to an actual human (not voicemail) and was told that Savannahs paperwork had been passed on to a Medical Advisor. That was the last we heard before getting a letter stating that she didnt qualify.
We never had a chance to tell anyone at Make A Wish what Savannah actually wanted to wish for...A trip to Disney where we could make her a wedding day princess. Her wish was honestly a relatively simple one for the organization. I know for a fact they handle THOUSANDS just like it every year. We just wanted to be able to stay at Give Kids the World. This costs Make A Wish $750. We were not even wanting airfare (transportation being the biggest cost footed by the wish granting organization in a wish process) as we were perfectly happy to drive our own van down to Disney. We reserved and paid for what we hoped would be an extension to Savannahs wish trip knowing that families only stay at Give Kids the World 5-6 nights.
I am so thankful for all the Make A Wish did for our family in 2008. Truly. Through the years our family has supported the organization financially through many of their fundraisers including having a team in the Walk for Wishes every year since it started in our city. We had planned on having our Sebastian miss his soccer tournament for the Walk for Wishes on November 10th. Now that I know that a whole group of deserving kids in the mito community is not served through them...I just don't know. Im still sorting out my feelings. Since sharing our news with our friends in the mito community many have written to me letting me know that their children (some with HUGE medical complications) have been denied as well. There is obviously still an enormous lack in awareness and understanding about this devastating disease.
Since getting this news we have purchased more DVC points through a friend of a friend. Since we wont be able to use the Wish Lounges for rest we needed to stay close enough to the parks to be able to go back in the middle of the day and let Savannah nap. At four years old she still naps several hours a day. We could not get all the nights we needed at one resort so we are booked at three. (Two nights in a studio at Animal Kingdom Villas, 4 nights in a studio at Board Walk and 3 nights at a one-bedroom at Bay Lake). We will make the tickets the kids Christmas present from Santa again this year. They are so good about this and not asking for toys.
Im sad that Savannah wont get the magic that comes with that special Give Kids the World Button or super useful GAC or get to experience all the wonder of Give Kids the World since only a wish granting organization can make a reservation at Give Kids the World ---we'd be willing to pay for it
We just can't make the reservation or get all that goes with it without an organization to handle it. I dont know that I have it in me to start the process with another (maybe more enlightened) wish granting organization. Once DVC points are paid for anyway we cannot cancel.
I am still going to try my darndest to make the trip an extra special one for Savannah. Ill sew what special outfits I can and put her hair up in a princess bun and bring her Halloween costume wedding dress. I will celebrate her bravery all these years
because she deserves it every bit as much as her brother did. Just as that of any other child with Mitochondrial Disease who looks perfectly normal on the outside but battles an invisible, unpredictable disease on the inside.
[Our Savannah in her Halloween costume at neighborhood party last weekend]
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