all about Samantha and her pretrip to GKTW

[alisam]

HI All
I have been reading the stories of the great wishes that everyone have posted and am so glad to be able to write that my daughter has just received her wish to go to GKTW and Disney. With gods help we will be going at the end of April. My daughter is 16 and was born with internal and external hydrocephalus. Little did we know this would just be the beginning of her struggles. Later she was diagnosed with long Qt syndrome of the heart ,PTEN
hamartoma tumor syndrome, hasimotos, arterialvascular malformations and a host of other disabilities that would put her in an wheelchair and in the hospital over 90 days a year. We applied for her wish after a girl she met in the hospital
told her how great it was when she went on her wish. We met our wish volunteers and they were super. They came over and talked to her about what she wanted and her dreams. They brought her gifts She loves puzzle books. That's what she does when she is in the hospital. She is using one as her countdown calender. Has anyone traveled by train as we are going on the auto train and wondered if anyone else had traveled on the train? How was it? We haven't talked with our coordinator yet but we were told any day we would be starting the details . We are so excited any advice that anyone has would be great. we have heard such great things about GKTW. Also if anyone's child has Pten it would be great to talk with you. I don't know anyone.
Thanks Janet

February 4th
What a great day today we heard from our travel coordinator. It looks like the day's in April are all ok so she will have her wish she wanted. They are trying to book the train. I will also find out if her wish was adopted so we can say thank you if it was. Their are so many special people out there that make all of these wishes come true. Is anyone going in April to GKTW

February 5th
I am so not good at this I just lost my whole writing about today. Today was such a great day. Samantha's wish coordinator called to let us know that her wish is now booked and we are ready to go. We also found out that her wish was adopted. Their is something so special in just knowing their are such wonderful people and companies that are willing to do this for our children. We travel to CHOP very often and our conversations are ones of blood tests , mri's and when will I be admitted back in the hospital again. I know this week when we drive there the conversation will be of GKTW Disney
cheerleading and of all the make a wish volunteers and travel agents and the family or company that adopted her wish. thank you to everyone

February 16th
Today we received our confirmation letter in the mail. It tells us all about our reservations ,the confirmation numbers and all of the bookings. We are taking the auto train down and Make a wish and our sponsors have booked us into a deluxe bedroom unit. We were able to locate our room based on the reservation number. It is so exciting for us. Our countdown is 67 days from today until we leave. I will post again soon with any other news.

February 23rd
Today Samantha's poem got posted an the Make a wish NJ Facebook site. It was awesome. all of the people that will be able to see what she wrote. Many people we don't even know were kind enough to comment on her poem and to send many likes. It was a special day for her

 

[t_daniels]

I'm not any help, but I thought I'd say hello. I have hydrocephalus as well.

 

[alisam]

Have you done a wish trip to Disney or another trip. Has you hydrocephalus resolved or do you presently have a shunt. Samantha entered a study when she was young and was treated with Diamox for over a year. At age 11 her hydrocephalus was resolved as well as the Arnold Chairi which had occurred as a result. We are so looking forward to our trip so if you have gone on a mke a wish trip we would love to hear about it. Thanks for saying hi we appreciate it as this is our first experience with disboard

 

[Lilfoot93]

I am so glad your daughter is getting her wish granted! I can't wait to hear all about your plans! We go on my son Trevor's wish trip in June.

Jackie

 

[alisam]

Hi Jackie
It sounds like you are as excited as we are. We have countdown calenders
everywhere He must be so excited I saw the pictues of his party they are great. Will you be staying at GKTW . We just got all of our confirmations and everyday we are on any site we can get our hands on. We are also going to see the worlds cheerleading event it is being held while we are down there. Samantha belongs to a special needs cheer group and is so excited to see the worlds. Please keep us up to date on the star wars wish as well I hope each day keeps your family well.
Janet

 

[t_daniels]

Have you done a wish trip to Disney or another trip. Has you hydrocephalus resolved or do you presently have a shunt. Samantha entered a study when she was young and was treated with Diamox for over a year. At age 11 her hydrocephalus was resolved as well as the Arnold Chairi which had occurred as a result. We are so looking forward to our trip so if you have gone on a mke a wish trip we would love to hear about it. Thanks for saying hi we appreciate it as this is our first experience with disboard

I haven't. I'm still on my original shunt. I wouldn't qualify for make a wish.

I think you'll find, the dis is addicting.

 

[t_daniels]

It's nowhere near as cool as Disney, but I did start a project for hydrocephalus kids. Not sure if shed like it, but check it out: projectpixiedust.tumblr.com

It's video messages from popular characters, Disney & otherwise, to children with the condition. If you click the 'video directory ' link, it'll show a list of all of them.

 

[Lilfoot93]

Hi Jackie
It sounds like you are as excited as we are. We have countdown calenders
everywhere He must be so excited I saw the pictues of his party they are great. Will you be staying at GKTW . We just got all of our confirmations and everyday we are on any site we can get our hands on. We are also going to see the worlds cheerleading event it is being held while we are down there. Samantha belongs to a special needs cheer group and is so excited to see the worlds. Please keep us up to date on the star wars wish as well I hope each day keeps your family well.
Janet

We are super excited!! My husband and I know the dates but the kids do not... We will have a reveal party a couple weeks before and the kids will find out then when we are going I'm sure there will be a countdown chain then! They do know we are going to Disney and SWW though. Yes. We will be staying at GKTW. I have been looking at it too... It is SO hard to decide which activities to do!

That is great there will be a cheer event while you are there!

Jackie

 

[alisam]

Hi Jackie
Is SWW star wars week. My daughter was telling me that their is a celebration every year down there. Are you staying the whole week. We had to plan down days for Samantha so we won't be going to Universal. We have 3 days at Disney and one day at Sea World. They have their down days planned at GKTW. My older daughter is in Medical school so she will only be there on the first weekend we miss her. so Samantha is bringing her friend that she has had since she was three. When is your reveal? we don't have our reveal party date yet. I can't wait for that and also to find out who adopted her wish as that is exciting too.
stay well
Janet

 

[alisam]

Hi I did read your pixie dust piece and it was great . I didn't have a chance to read on the hydrocephalus. did you start a support group for children. I'm glad to hear you have had no major issues with your shunt. we were so worried about that . that is why we put her in the study. thank god for us that part worked out. but that only ended up being a symptom of what was to come. It is nice that you are helping other children who have been through, or are still going through the same thing. Having support is great. Janet

 

[t_daniels]

Hi I did read your pixie dust piece and it was great . I didn't have a chance to read on the hydrocephalus. did you start a support group for children. I'm glad to hear you have had no major issues with your shunt. we were so worried about that . that is why we put her in the study. thank god for us that part worked out. but that only ended up being a symptom of what was to come. It is nice that you are helping other children who have been through, or are still going through the same thing. Having support is great. Janet

My group is all ages .
So she has no shunt anymore?? Fantastic!

 

[Lilfoot93]

Hi Jackie
Is SWW star wars week. My daughter was telling me that their is a celebration every year down there. Are you staying the whole week. We had to plan down days for Samantha so we won't be going to Universal. We have 3 days at Disney and one day at Sea World. They have their down days planned at GKTW. My older daughter is in Medical school so she will only be there on the first weekend we miss her. so Samantha is bringing her friend that she has had since she was three. When is your reveal? we don't have our reveal party date yet. I can't wait for that and also to find out who adopted her wish as that is exciting too.
stay well
Janet

Yes. It is Star Wars Weekend. We will be there June 2-8. I am not sure when our reveal is yet. I think it is about 2-3 weeks before we leave. That is great someone adopted your wish! I am glad your older daughter gets to spend some time with you guys. I know the first day we will most likely hang out at GKTW as we are taking a red eye and get in t 6am! Plus the 3 hour time difference... We are going to try and squeeze in legoland too as that was on his wish list too.
And going to the Kennedy Space Center would be pretty cool too! SO much to do and so little time!

Jackie

 

[alisam]

Hi Jackie
It is so much fun to hear about a boys wish. One of the space center and
lego's . Ours is of nail polish and princesses. My sister took her sons to the space center and they did some kind of flying. She said it was alot of fun. do you hear from your wish volunteers often or just once in a while? I am sure our reveal will be the same, a few weeks out. one of our volunteers called the other day and we will be getting a package confirmation in the mail this week. We live at the Jersey shore about a mile from the ocean. We love it . Approx. where are you from that you have such a time difference. My older daughter is in Chicago and has a time difference with her flight. What Hospital do you use.
All of Samantha's specialists are in Children's hospital in Philadelphia. Except 3 that are in Cleveland Clinic in Ohio. We travel alot for doctors. So it is going to be fun to travel for Disney. I booked Chef Mickeys and Sci fi movie theater for dining. If you are downtown Disney their is a dining place called T-REX it is great.

Stay well
Janet

 

[Lilfoot93]

If it were up to my girls it would be all princesses and getting their nails done too Although my girls LOVE Star Wars. Just not as much as their brother

We on the west coast. I kinda wish that they had Star Wars Weekends in Disney Land We ended up just doing one reservation and that was for the Tusker House.

I'm sure we will do Downtown Disney too. The nice thing is my Dad is going with us so maybe my husband and I can actually have a couple hours to ourselves

Jackie

 

[alisam]

Hi Jackie
I have sent this response now 3 times apparently i am doing something wrong. I am glad your dad is coming with you. I am sure it will be nice if you get some time to yourselves. My husband and I are Together 31 years married 26 and still find it hard to get away. do you live close to Disneyland and do you go often. I would love to visit the west coast some day Vegas and California.
What is the Tusker house is it a character experience or a dining experience.
We got all of our paperwork yesterday and conformation on our travel arrangements. Way exciting. I was on the site looking up what train car we were in and our rooms open up and become one giant room. Can't wait for that
We loved the train last time we were on it one way was good very little rocking the other way too much rocking. I am hoping for a smooth trip. Have you ever been to disneyworld? We go every couple of years as it is really the only vacation Samantha can do,She can't do roller coasters or wild rides. Is this the same for your son?

Stay well
Janet

 

[Lilfoot93]

We are not close to Disney. The last time I was there was 2003. Can't believe it has been 10 years! If I lived near Disney I am sure I would be there all the time Vegas is pretty cool too. We have been there a couple times.

Tusker House is in Animal Kingdom and is a character dining experience. I've heard good reviews... This is our first trip to Disney World so I am trusting other people's word that it is good

How fun riding in a train! Sounds better than flying... I'm not the best flyer as it always makes me nervous. It will be interesting flying with the kids! This is our first family vacation and the kids are over the moon about flying in a plane! I'll be sure to get some meds from the doctor to relax me while flying. I used them when my husband and I went on a work conference to NY a few years ago and they worked wonders!

At this time Trev does not have any ride restrictions but he isn't tall enoug to do them all right now anyway. Although he just had some testing done the last couple weeks and that could change when I get the results.

Jackie

 

[Mjtsmami]

I'm happy that's he's getting her wish! I love reading about kids wish trips to DW, they are so special and it's amazing the pixie dust that surrounds them.

We're taking the train down from NYC at the end of April. I've taken it upstate but never overnight. My boys are looking forward to sleeping on the train.

 

[alisam]

Hi Jackie
Hopefully all of Trevors test will come back good and their will still be no restrictions. I hate to fly also so I am glad Samantha can't fly It is a great reason to take the train . Jealous about the Vegas thing I wish. I have only been to animal kingdom once . My girls are girly girls so the animals didn't thrill them. So every time we go they say lets skip it another thing I would like to do again. The Tusker house sounds great. My daughter is in that special needs cheer and they cheer in Florida for nationals so this year we will be in Florida twice. That is nice that this is your first family vacation. I am sure you are going to have a great time. Anytime you get away from hospitals or doctors is a great thing. What is he looking forward to most and what are you looking forward to most?

Stay well
Janet

 

[alisam]

Hi MJTSMAMI
Is this your make a wish trip in april or are you going on vacation? Are you taking the auto train or are you leaving from NY. My daughter lived in NY for 2 years. She went to Mt Sinai Med school . She is Now in Illinois. If this is your make a wish trip will you be staying at gktw. What are the dates you are going. We are going from April 25 through May 3rd/4th returning home.Boy that was a lot of questions. Samantha is so excited about or trip I am sure you have been able to read . We have been on the train before but she is more nervous this time because her mobility is much less. she walks very little and is nervous about switching cars for dinner or the lounge. Are you taking a sleeping car?
talk to you soon
stay well Janet

 

[Lilfoot93]

Hi Jackie
Hopefully all of Trevors test will come back good and their will still be no restrictions. I hate to fly also so I am glad Samantha can't fly It is a great reason to take the train . Jealous about the Vegas thing I wish. I have only been to animal kingdom once . My girls are girly girls so the animals didn't thrill them. So every time we go they say lets skip it another thing I would like to do again. The Tusker house sounds great. My daughter is in that special needs cheer and they cheer in Florida for nationals so this year we will be in Florida twice. That is nice that this is your first family vacation. I am sure you are going to have a great time. Anytime you get away from hospitals or doctors is a great thing. What is he looking forward to most and what are you looking forward to most?

Stay well
Janet

How fun that she gets to cheer in nationals! My girls are looking forward to seeing where Ariel lives and Trev is all about Star Wars I am looking forward to Harry Potter land. I have wanted to go since they first opened it!

Jackie