Make a Wish (and other organizations) ~ Wish Trippers UNITE! Volume FIVE!!

[sweetmarieT]

I'm glad you are all having a great time. I can't wait to see some of your pictures. I've been told to take multiples of the same shot to make sure you get the best pictures possible.

 

[starienite]

We are only a few weeks out and we have a snag. Well...a snag for my brother, not so much for me. Our wish coordinator offered to add my brother to GKTW to stay like my dad is. We got a letter/brochure today that has everyone but my brother listed. I am pretty sure that this is because it took him so long to simply print up the form, sign it, scan it and email it back. Our coordinator is out of the office today, but she will be in tomorrow and let us know what is up.

 

[Corrine 1973]

We are only a few weeks out and we have a snag. Well...a snag for my brother, not so much for me. Our wish coordinator offered to add my brother to GKTW to stay like my dad is. We got a letter/brochure today that has everyone but my brother listed. I am pretty sure that this is because it took him so long to simply print up the form, sign it, scan it and email it back. Our coordinator is out of the office today, but she will be in tomorrow and let us know what is up.

Good luck to him, hopefully everything works out. Next time tell him to not take so long.

 

[Momto15]

Thank you all for the input about hotels, I really appreciate it. My mom and aunts are getting together this Sunday to make some final plans. There are many good options!

I have another question about packing.

Any advice?
Anything you would definitely be sure to bring?
Anything that you feel is just silly to bring and you didn't use?

How about for the kids? How many outfits? Since there is a washer and a dryer I was hoping to pack light and save money on the luggage fees. Then again we will have medical supplies and diapers for three of the kids so going "light" isn't going to be too "light" anyhow! LOL

I would love feedback. Thanks again for all your help!!
Blessings,
Sarah

Princess Angelinas MAW Pre Trip Reportwww.disboards.com/showthread.php?t=2797616

 

[carebearkidney]

Hello all! My son just was qualified for a wish, but hasn't met anyone from the MAW foundation yet. (they said there was a 3-6 month backlog) He wants to go to Disney World - or in HIS words "ride the elephant, shoot Zurg and hug Sully"...so fingers crossed!
A little background : his name is Matthew and he received his kidney transplant on January 14, 2010. Happy, happy day for us! When I was pregnant, I went for an ultrasound when we moved back home (my husband was active in the Coast Guard and had just switched to reserves) at 16 weeks. His bladder was bigger than his head and he had absolutely no amniotic fluid. We were told three times, by three different doctors to terminate. We finally found our "miracle worker" that treated our son as a person and not a statistic. We had four fetal surgeries, 13 amnioinfusions and 11 bladder taps until Matthew decided at 31 weeks he had had enough poking and prodding in there (little did he know what he was stepping into on the outside!) I had an emergency c-section - because this boy likes drama - due to a prolapsed cord after 17 hours of trying to keep me from being in full blown labor. He was born in complete kidney failure. He started peritoneal dialysis at 7 days old. When they failed, he began hemodialysis at 6 months old and remained on that for 13 months until his transplant. He is g-tube dependent and as a vesicostomy (pees out of an opening in his abdomen - he has no urethra...but we are working on that next). He's already had one rejection episode and that's been one too many for me! He's had a total of 25 surgeries in the 3 years, lab work weekly, diagnosed with congestive heart failure and renal rickets, several line infections, several cases of sepsis and a DOOZEY case of PTSD. But - he's HAPPY!! Such a sweet boy and always smiling. I love him with all of my kidney! <3

 

[Cinderella2006]

Hi to you all.

Ill start by introducing myself,,,My name is vicki, I have 2 children. My eldest recently made her wish and she chose WDW!! Im looking for any uk ptrs if there are any out there. Im still getting to grips with the site but will post a detailed introduction soon. Thanks in advance

Hi there, i have just found this thread too! We are from the UK and have recently had confirmation of our Wish and are waiting to hear when we will be going. When are you hoping to go? My Name is Aimee and we will be going with my husband and three children one of which is Charlie who is soon to be 4

 

[nesser1981]

Welcome! We're going on our Wish Trip in 32 days!

Sounds like a strong, brave little guy! My daughter only has one kidney, she had one of hers removed last year due to cancer. Be sure you start a pre trip report and ask lots of questions! I'm going to try my best to document every detail when we go next month.

Hello all! My son just was qualified for a wish, but hasn't met anyone from the MAW foundation yet. (they said there was a 3-6 month backlog) He wants to go to Disney World - or in HIS words "ride the elephant, shoot Zurg and hug Sully"...so fingers crossed!
A little background : his name is Matthew and he received his kidney transplant on January 14, 2010. Happy, happy day for us! When I was pregnant, I went for an ultrasound when we moved back home (my husband was active in the Coast Guard and had just switched to reserves) at 16 weeks. His bladder was bigger than his head and he had absolutely no amniotic fluid. We were told three times, by three different doctors to terminate. We finally found our "miracle worker" that treated our son as a person and not a statistic. We had four fetal surgeries, 13 amnioinfusions and 11 bladder taps until Matthew decided at 31 weeks he had had enough poking and prodding in there (little did he know what he was stepping into on the outside!) I had an emergency c-section - because this boy likes drama - due to a prolapsed cord after 17 hours of trying to keep me from being in full blown labor. He was born in complete kidney failure. He started peritoneal dialysis at 7 days old. When they failed, he began hemodialysis at 6 months old and remained on that for 13 months until his transplant. He is g-tube dependent and as a vesicostomy (pees out of an opening in his abdomen - he has no urethra...but we are working on that next). He's already had one rejection episode and that's been one too many for me! He's had a total of 25 surgeries in the 3 years, lab work weekly, diagnosed with congestive heart failure and renal rickets, several line infections, several cases of sepsis and a DOOZEY case of PTSD. But - he's HAPPY!! Such a sweet boy and always smiling. I love him with all of my kidney! <3

 

[Maggiesmama]

Hello everyone! Introducing myself! I am Lauren, mama to 3 amazing kiddo's. Our daughter Maggie is 3 and is our wish child. She has been approved to receive a wish and we are meeting with her wish granters next weekend. Maggie is absolutely OBSESSED with the princesses and is going to wish to meet all the princesses at "Cinderella's beautiful castle"

Maggie was diagnosed at 4 weeks of age with an extremely rare bone marrow disorder and has been through and is still dealing with A LOT. A lot of transfusions, biopsies, infections, needles...etc. At some point she will require a bone marrow transplant. I can't tell you how happy I am that she is going to experience something like this. I cry every time I think about it!!

I am looking forward to "meeting" all of you and hope to learn a lot from everyone. This will be our first REAL vacation with our children and I have no idea where to start! Definitely want to make the absolute most of it!

 

[Moodyzblu]

Hello everyone! Introducing myself! I am Lauren, mama to 3 amazing kiddo's. Our daughter Maggie is 3 and is our wish child. She has been approved to receive a wish and we are meeting with her wish granters next weekend. Maggie is absolutely OBSESSED with the princesses and is going to wish to meet all the princesses at "Cinderella's beautiful castle"

Maggie was diagnosed at 4 weeks of age with an extremely rare bone marrow disorder and has been through and is still dealing with A LOT. A lot of transfusions, biopsies, infections, needles...etc. At some point she will require a bone marrow transplant. I can't tell you how happy I am that she is going to experience something like this. I cry every time I think about it!!

I am looking forward to "meeting" all of you and hope to learn a lot from everyone. This will be our first REAL vacation with our children and I have no idea where to start! Definitely want to make the absolute most of it!

Hi and !!

Congratulations on getting Maggies wish ! Maggie will LOVE Disney and meeting the Princesses.

Please let us know how the meeting goes ! Looking forward to hearing more.

 

[Maggiesmama]

Hi and !!

Congratulations on getting Maggies wish ! Maggie will LOVE Disney and meeting the Princesses.

Please let us know how the meeting goes ! Looking forward to hearing more.

Thank you so much for the warm welcome!! We are SO excited!!

 

[princessSKYLA]

I am brand new on here and just getting started with our wish planning. My daughter is 3 years old and was diagnosed at 23 months with a brain tumour. I will introduce myself and my family a little later and tell you more about our princess Skyla. This is a wonderful site and it is beautiful to share in the lives of your own little angels. Thank you <3

Skyla's wish is ALL about the princesses and the castle. She actually wants to play hide & seek inside the castle with them. Not sure how they are going to pull that one off. LOL.

Would love some suggestions on the little extras available with princesses. I just can't wait to see her little face light up with joy! Thanks so much for any information

 

[carebearkidney]

Nesser1981 - thank you for the welcome! I can't wait to read about your trip!! I've been staying up WAY too late each night reading about past trips. Thirty-two days out...I don't think I'd be sleeping at all by that time. I get WAY too excited just when we are going to the Atlanta Zoo - Disney World?? Forget it!!

Maggie's mom - I was unable to donate a kidney to my son (stinking kidney stones!) but just TODAY (this morning actually) I signed up at Be The Match for bone marrow donation. I get my kit in two weeks. Looking forward to "paying it forward" and helping another family have a second chance at life.

 

[nesser1981]

Welcome! Be sure you start a Pre Trip Report so we can follow along. My DD has beat cancer twice, she is 6. We leave in 32 days for her Wish trip. We are doing Cinderella's Royal Table to see the princesses.

I recommend doing the Bippity Boppity Boutique with your DD, we did that with ours when we went before for a 1 day trip. She's still bald from her treatment, so we are doing pirate make-overs this time.

I am brand new on here and just getting started with our wish planning. My daughter is 3 years old and was diagnosed at 23 months with a brain tumour. I will introduce myself and my family a little later and tell you more about our princess Skyla. This is a wonderful site and it is beautiful to share in the lives of your own little angels. Thank you <3

Skyla's wish is ALL about the princesses and the castle. She actually wants to play hide & seek inside the castle with them. Not sure how they are going to pull that one off. LOL.

Would love some suggestions on the little extras available with princesses. I just can't wait to see her little face light up with joy! Thanks so much for any information

 

[melissa924]

One week until we leave!!!!!

Maybe I should start packing

 

[nesser1981]

Awesome! Yes, start packing!

One week until we leave!!!!!

Maybe I should start packing

 

[Moodyzblu]

One week until we leave!!!!!

Maybe I should start packing

Woohoo !! It's almost here.

 

[Sean's momma]

Well we are home. It was very bittersweet to leave GKTW. We had the time of our lives and have some awesome memories that I can't wait to share with you guys when i get my trip report started (hopefully later today!). GKTW does indeed have wifi!! Tho we lost cable and internet for 2 days while we were there. At your orientation you will get a paper that lists what dining options will be available during your stay. it is an additional half sheet that they place inside of the bound family guide.

Also, my son is 4 and 50 lbs so finding a stroller for him is very hard so we decided to use the disney strollers while we were in the parks. Sean is 42" tall and we used the double stroller for him because his head was hitting the canopy and the double gave him more room to sprawl out. We were able to park in the disabled parking spots without a permit as long as we spoke with the parking attendants along the way. Make sure you have your GKTW parking pass available. Follow the blue lines on the pavement and you will end up in the right place.

If you have a kiddo like mine who you don't have a stroller for/don't want to cart yours from home, GKTW does have strollers you can borrow for the time you are there. they have both singles and doubles. we had a maclaren (sp?) that we borrowed.

Also make sure you borrow a video camera from them if you don't have one. we got some very precious memories just by doing that. It is free and they will put all the videos/pictures you take with it onto cds to take home with you! we left with 3 video cd's and a picture cd!

i'm sure i will remember more tips for you guys and i will update on here or on my trip report when i do! Right now its off to unpacking...

 

[nesser1981]

I'm so glad you guys had a wonderful time!!

Where you able to get a double stroller at Disney for no additional charge with your GKTW button?

That's awesome you can borrow a stroller from them. We were thinking about just picking up an umbrella stroller for when we went to DTD.

I CANNOT WAIT to read your trip report! We have 30 days and I want to pack now! LOL!

Well we are home. It was very bittersweet to leave GKTW. We had the time of our lives and have some awesome memories that I can't wait to share with you guys when i get my trip report started (hopefully later today!). GKTW does indeed have wifi!! Tho we lost cable and internet for 2 days while we were there. At your orientation you will get a paper that lists what dining options will be available during your stay. it is an additional half sheet that they place inside of the bound family guide.

Also, my son is 4 and 50 lbs so finding a stroller for him is very hard so we decided to use the disney strollers while we were in the parks. Sean is 42" tall and we used the double stroller for him because his head was hitting the canopy and the double gave him more room to sprawl out. We were able to park in the disabled parking spots without a permit as long as we spoke with the parking attendants along the way. Make sure you have your GKTW parking pass available. Follow the blue lines on the pavement and you will end up in the right place.

If you have a kiddo like mine who you don't have a stroller for/don't want to cart yours from home, GKTW does have strollers you can borrow for the time you are there. they have both singles and doubles. we had a maclaren (sp?) that we borrowed.

Also make sure you borrow a video camera from them if you don't have one. we got some very precious memories just by doing that. It is free and they will put all the videos/pictures you take with it onto cds to take home with you! we left with 3 video cd's and a picture cd!

i'm sure i will remember more tips for you guys and i will update on here or on my trip report when i do! Right now its off to unpacking...

 

[Moodyzblu]

Well we are home. It was very bittersweet to leave GKTW. We had the time of our lives and have some awesome memories that I can't wait to share with you guys when i get my trip report started (hopefully later today!). GKTW does indeed have wifi!! Tho we lost cable and internet for 2 days while we were there. At your orientation you will get a paper that lists what dining options will be available during your stay. it is an additional half sheet that they place inside of the bound family guide.

Also, my son is 4 and 50 lbs so finding a stroller for him is very hard so we decided to use the disney strollers while we were in the parks. Sean is 42" tall and we used the double stroller for him because his head was hitting the canopy and the double gave him more room to sprawl out. We were able to park in the disabled parking spots without a permit as long as we spoke with the parking attendants along the way. Make sure you have your GKTW parking pass available. Follow the blue lines on the pavement and you will end up in the right place.

If you have a kiddo like mine who you don't have a stroller for/don't want to cart yours from home, GKTW does have strollers you can borrow for the time you are there. they have both singles and doubles. we had a maclaren (sp?) that we borrowed.

Also make sure you borrow a video camera from them if you don't have one. we got some very precious memories just by doing that. It is free and they will put all the videos/pictures you take with it onto cds to take home with you! we left with 3 video cd's and a picture cd!

i'm sure i will remember more tips for you guys and i will update on here or on my trip report when i do! Right now its off to unpacking...

Wow .. that went fast !! Glad to hear from you and can't wait to hear all about your trip and see pics (and maybe some video ??).

 

[TimmysMommy]

Our MAW dates are February 26th - March 3, 2012!! Just a mere 5 weeks away!! So excited! So nervous! So full of emotion!! I am afraid we will miss an opportunity for a memory if I don't plan. But I am afraid I will miss the memory all together if I focus too much on the plan! HELP!!??

Well, I guess I better begin our story...

Timmy was born Feb. 17, 2008 after 2 days of induced/intense labor. After pushing for 3.5 hours, he was brought into the world via emergency C-section. This should have been our first clue: Timmy's abnormally large head size. During his first year of life he was a BIG rambunctious, FULL of life, little boy. He did have a lot of ear/sinus infections and 2 bouts of pneumonia but he was never hospitalized. At his 1 year check up, his pediatrician was concerned about his head size and ordered a CT scan. She also looked at my family history and STRONGLY urged us to have a Genetic specialist look at him. I was scared. My brother died of the disorder she was concerned about and I was living in a happy little place called: Denial. We did go to the appointments and on August 19, 2009 my worst fear was realized: Timmy was diagnosed with Mucopolysaccharidosis (MPS) Type II, commonly called Hunter Syndrome.

MPS II, is a degenerative disorder. Timmy's body lacks the enzyme Iduranate Sulfatase II which is responsible for breaking down all the GAG (cellular waste) in his body. It can cause cognitive delay resulting in death because the brain shuts down. It can cause the heart valves to thicken and malfunction and can cause heart palpitations. It causes the liver and spleen to be enlarged - not working effectively. It causes muscle and joint stiffness. It can cause communicating Hydrocephalism. Most children (boys) with MPS II develop normally until they reach between the ages of 2 and 5. At that time, they regress until death which is usually before the age of 20. All in all it is a grim picture.

Currently Timmy is in the "honeymoon" phase of MPS II. He is still developing normally and is a joy to be around. He receives weekly enzyme replacement therapy (ERT) of the missing enzyme. It will help his physical symptoms but if he shows cognitive delay his weekly treatment will not help. So we wait...

About a year ago, Timmy's OT diagnosed him with Sensory Integration Disorder (SID). Timmy is specifically sensory seeking. He needs deep pressure compression to sort out all the incoming sensory input that his body cannot normally process and sort out. He wears a compression vest, sleeps with a weighted blanket and is on a sensory diet.

Besides Timmy, our family has a daddy, Brent and a mommy, Amy (ME) and a little sister, Claralyn (CLARA). Clara is 2 years younger than Timmy. Timmy's needs and appointments require me to be home full time. Timmy's daddy is a real estate appraiser so you can guess how well that is feeding our family during this housing nightmare. Brent just accepted a job with a management company in Indianapolis so hopefully things work out well for us - he has told them about the MAW trip...we are hoping they honor it. About a year ago in order to help Timmy work on his social skills, I took a part time job working with a friend at her preschool. I teach the preschool class Monday-Thursday mornings, then transport Timmy and another classmate to a special needs preschool where Timmy receives Speech, OT and PT therapies Monday-Thursday afternoons. Every Friday Timmy has swim therapy from 915-10. Then we rush home to meet his nurse, Kathi, and have a 4 hour infusion. No rest for the weary!!

We are excited about his wish because Timmy will get to interact with all the characters he has grown to love on TV and DVDs. We could never afford to make this happen!! We are looking forward to taking it all in...making memories that we can draw on when the road gets rough.

I have begun to gather information on the parks. I am calling Monday to set up extra character meetings, dining reservations, and such. Any suggestions would be great! We are currently a little stumped about SeaWorld. Help?!?