Wishes, Stitch, dolphins and other mischief. A wish trip in the works

[yeti5353]

Hi, I am Deb Mom to Molly age 10 and Kristie age 13. Molly is the wish child. She has had many wierd but not life threatening diseases in her life until this March when she was diagnosed with a rare form of kidney disease- ANCA negative, Pauci Immune, cresentic necrotic glomerulonephritis! we call it the PIG (pauci immune glomerulonephritis). This is the rarest form of this very rare kidney disease. Not a whole lot is known about it. you can get it into remission but it will come back with a vengance. The doctors never say if, they say WHEN. WHEN her kidneys fail, WHEN she goes on dialysis, WHEN she needs a transplant. They cant predict in any way if we are talking her kidneys tanking this year or in ten years. But our nephrologist wanted her to go on her wish trip now. When she gets really sick its going to be fast. we wont be able to go while on dialysis, on the transplant list or for at least six months post transplant. A lot of prayers and lots of advice later I decided to go with no regrets and we started our make a wish journey.

Molly intially could not decide between swimming with the dolphins or going to Walt disney World. When we found the dolphin trip would be five days vs 7 days she chose WDW. For a variety of reasons we had to sell our camping trailer and was able to set aside a chunk of the money to pay for discovery cove. So she gets both wishes!

M was pretty depressed before MAW came on the scene. she has had to take massive doses of steroids and a chemo drug. The steroids made her gain weight and get a very puffy face alon with severe hypertention. The combo of the two drugs make her very immune supressed so every fever means a trip to the emergency room for a "fever party"

I am hoping lots of disney and dolphin souvineers and an awesome photo book will be enough to keep the memories and sense of hope alive for her through the struggles ahead.

[yeti5353]

[yeti5353]

[jjmomof4]

Originally Posted by yeti5353

Molly intially could not decide between swimming with the dolphins or going to Walt disney World. When we found the dolphin trip would be five days vs 7 days she chose WDW. For a variety of reasons we had to sell our camping trailer and was able to set aside a chunk of the money to pay for discovery cove. So she gets both wishes!

I am hoping lots of disney and dolphin souvineers and an awesome photo book will be enough to keep the memories and sense of hope alive for her through the struggles ahead.

Sounds like a great wish! My sons wish was WDW and GKTW, and he wanted to do Jedi Training. After a week of watching videos of everything in Orlando he's actually excited about swimming with dolphins too! Which had been his twins original wish, but his twin gave up dolphins in lieu of surfing and going to CA to see family. We are doing Discovery Cove in the middle of our trip for a nice relaxing day!

I hope your daughter and your whole family makes some amazing memories on your trip!

[Lilfoot93]

Joining in! I am so glad that Molly gets her wish! That is wonderful that she will end up getting both wishes!

Jackie

[Momtokcc]

I hope this trip is wonderful for Molly!!

[maroo]

Originally Posted by yeti5353

Beautiful pictures! She is a beautiful young lady!!!

[yeti5353]

Make a Wish called early this summer and asked if Molly would like to be a princess in a parade. I did not give it alot of thought, Molly said sure. Wow it turned out to be a wish in its self!

a small town royalty association near us does this every year, the get a name from MAW of a girl who would like to be queen for a day and ride on their float in one of the last parades of the year.

They bought her a dress, which due their starting late on the dress and Molly's swollen body made for a last minute stressful end to the week but come Saturday morning all was in place.

we had to be at the town 45 minutes away at 8am.
My girls informed me that princesses do not get up at 6 am on Saturday mornings, especially during the school year!



we were greated at the hair salon by this sign:

[yeti5353]

They began to get Molly ready: (the bear is her own and I had bought the princess gear for the bear)


Looking some what unsure about what she has gotten into here.

the queen is doing her toe nails, a princess doing her make up and the stylist doing her hair!


first glipse of her self with hair, make up, and crown



They also did big sisters hair in an updo and gave her a sister of queen Molly shirt.

[yeti5353]

next we went to perkins for breakfast with all the royalty and their famies. I saw this display and had to take photo! Perkins gave Molly the bear.


Next Molly and the Junior royalty got dressed. they gave her the jewlery also

Royalty photo; Molly is not that tall, she is standing on a rock



her spot on the float, normally the real queen sits here


extreme happiness

[yeti5353]

family photo with the float before the parade



Parade photo


after the parade the gave us a bucket of gifts, bears, aquarium passes, a family portrait package, t shirt for queen Molly and massage gift certificate for me! Also they will be sending us a photo cd from the photographer that was with us all day. Totally awesome and overwhelming.

so especially great for my little one who thinks what ever beauty she had was stollen by the side effects of the prednisone.

[Momtokcc]

Wow - that was so great!! I am glad Molly had a good time doing it...she looked beautiful! Thanks for sharing the pics!

[wishin' on a star]

Hi Deb,
I'm a bit late to say hello --but wanted to pop in and introduce myself. I have a lot of family in Minnesota, and my parents lived in Shorewood while I was in college. I spent summers there--worked at Byerly's in Edina and Target near Ridgedale. My mom grew up in Darwin--the town with the largest ball of twine made by one man. It's kind of between Litchfield and Hutchinson, if you know any of those places. We live in the DC area now, but we'll be in MN next year for a family reunion.

Anyway, my DD went on her wish trip two years ago, and it was totally magical. You will have the most wonderful time. Molly will have no doubts that she IS the most special and beautiful princess after this trip. And it's awesome that you get to do Discovery Cove also--I know my kiddos would love that! I hope you are having fun with the planning. Do you have any special dining reservations planned?

I love the parade pics--Molly must have loved all that attention. What a terrific experience!

[yeti5353]

Originally Posted by wishin' on a star

Hi Deb,
I'm a bit late to say hello --but wanted to pop in and introduce myself. I have a lot of family in Minnesota, and my parents lived in Shorewood while I was in college. I spent summers there--worked at Byerly's in Edina and Target near Ridgedale. My mom grew up in Darwin--the town with the largest ball of twine made by one man. It's kind of between Litchfield and Hutchinson, if you know any of those places. We live in the DC area now, but we'll be in MN next year for a family reunion.

Anyway, my DD went on her wish trip two years ago, and it was totally magical. You will have the most wonderful time. Molly will have no doubts that she IS the most special and beautiful princess after this trip. And it's awesome that you get to do Discovery Cove also--I know my kiddos would love that! I hope you are having fun with the planning. Do you have any special dining reservations planned?

I love the parade pics--Molly must have loved all that attention. What a terrific experience!

Hello, yes I know all the places you mention, have not been to the great ball of string though. we live near byerlys!

Molly did love the parade alot and yes, it did go to her head just a wee bit being the queen!

We are going to eat breakfast with stitch at O'hana and a lunch at the crystal palace. Also Teppan Edo in Epcot.

[yeti5353]

Two weeks till we go! we are so excited!!

we made our tye dye mickey head t shirts and they turned out awesome!
I use the directions from this site:
http://disneydreamerdesigns.blogspot...-t-shirts.html

I wish had used only two colors though.

first photo is of big sis with her shirt on. the other two shirts are on the floor

.




Molly has been having a lot of bad leg pains which they think is due to her hypermobile joint syndrome. we finally found a physical therapist that specializes in this and she thinks she can cut her pain down to little or none in three to four months. I wish we had found her sooner. we have "dafo" (orthotics) comig with the silly name of chipmunks! I probably will need to buy her new shoes when they come. Unfortuately she just outgrew her tennis shoes and I had just replaced them. i do worry about what will happen in the parks with her pain and how we will manage it. I have convinced her that riding in the wheelchair MAW rented for us will hopefully decrease the stress on her knee joints and prevent some of the pain.