The Many Adventures of Bridgie the Boo Wish Trip -GKTW 6/27-7/3/11 PTR

[mysevendwarfs]

We just found out Friday that our DD Bridgie is confirmed to go to Give Kids the World on her wish trip!!! We are all thrilled as she loves Disney. I have been a long time lurker (2001 with a different account) and a rare poster on the forums. I love DIS as it has been such a great resource for our family and everyone is so helpful and friendly.

We will be going to Give Kids The World on June 27-July 3. We were so thrilled that our wish organization, Rainbow Connection, is allowing our whole family to accompany her. Our family consists of our 7 children, my husband and me. The illness of a family member takes a toll on the whole family. It has been a difficult two years, but one filled with joys and miracles as well. We are all looking forward to much needed fun time together as a family. We feel so blessed to be able to enjoy this along with our little girl.

Bridget is 10 years old and just about one of the sweetest kids you will ever meet. She suffers from a brain tumor and has been through an amazing journey since her onset of symptoms two years ago. I promise to post more about her journey in my next post.

This will be my first trip report and I admit I have no idea what I am doing Thanks for joining us on our journey!

 

[mysevendwarfs]

A little about our wish kid..

Almost exactly two years ago this week, Bridget came home from school with what we thought was a stomach bug. It quickly became clear it was much more than that as she was very confused about basic facts and actions. She couldn’t remember her name and how to turn on a light switch. After a weekend in the hospital for what the doctors believed was encephalitis, she was much better and life resumed. Something just wasn’t right though and both her dad and I had an uneasy feeling about how she was doing. We took her back to the dr., but they could find nothing concerning.

One day in June all that changed. Bridget woke up and couldn’t perform basic functions (she had two legs in one pant leg), fell down and thought her left shoe wasn’t on. She was very slurry and couldn’t swallow. They did a cat-scan and I could tell the dr. was immediately concerned. Long story, but they eventually found out she was having silent seizures. She could be playing cards even while she was seizing and you would never know. We spent over two weeks in ICU and on the floor while they tried to determined the cause. A brain biopsy did not show any cancer. Seven months later after multiple hospitalizations, continued major neurological problems, including a shunt surgery for hydrocephalus, the doctors did a second brain biopsy. This one showed an extremely rare presentation of oligodendroglioma brain tumor cells in her meninges. It was inoperable as it was not a mass, but cells they thought were only in the meninges.

Bridget started chemotherapy in Dec. ’09, five days after her sister was born. She has had a few major scares, but our Bridget is a fighter. The tumor cells have caused her to developed a chiari twice which put pressure on her brain stem. She was scheduled for surgery in January of 2010 as she couldn’t walk without assistance and her speech was very slurred. We had so many people offering prayers for her. The morning before surgery she came downstairs by herself and practically ran through the kitchen. Needless to say I called the neurosurgeon right away. The neurosurgeon said he couldn’t believe the MRI was the same child from the week before and he couldn’t explain why. I know it was an answer to prayer. God was with us and she has continued to surprise everyone.

While the chemo seemed to be improving her condition, we had a few other major scares. The seizures returned last summer. We were on our way home from WDW and stopped to spend some time with family in West Virginia where she ended up convulsive seizure. It was the scariest moments of my entire life. We had a two hour drive as they have only room for the patient and medical personnel, but the amazing thing was that my husband’s flight to meet us for the weekend was landing within moments of Bridget’s arrival. He arrived at the hospital before they would even let him into the ICU! One of the reasons she is so excited for Disney is that the seizures erased some of the most special moments at Disney.
Bridget continued to have seizures and more neurological difficulties. Since Bridget’s MRI showed an increase in the cystic areas, her doctors once again decided that a chiari surgery was reduce the pressure and fluid on the spine and in the brain. The surgery was on Dec. 20 and did not go as planned. Bridget after surgery was in very serious condition in the ICU, as the surgery resulted in a shift that put increased pressure on the brain. She lost her ability to swallow, talk and was on a breathing tube. Her physicians did not give us much hope and encouraged us to enroll in hospice. The doctors thought if she left the hospital at all it would be with a trach and that it was just a matter of time. The doctor met us on Christmas night to confirm this devastating news.

We had so many people praying for her and the Lord really showed us His comfort and peace. We asked everyone to pray for a Christmas miracle. Within days Bridget was sitting up, breathing tube out, and eating a Happy Meal. It was the happiest meal ever!!! She defied everyone’s expectations! She was able to start radiation and chemotherapy which required her to be strapped face down to a table for 45 minutes daily. She earned the title Bridget the Brave from all her friends and family! Since that time her last 3 MRI’s showed improvement. Miracles happen everyday. We know. We have seen them!

Bridget is currently on chemotherapy and has a long journey ahead, but we know God has a plan for her. Our family motto is "every day with joy" We are looking forward to many days of joy at GKTW and WDW. Thanks for sharing our journey

 

[tinytreasures]

What a amazing little girl you have. Love that you have a big family too. You are going to love GKTW it is a amazing place.

 

[angeque143]

What an amazing little girl you have and how wonderful that she is getting her wish...She is absolutely beautigul!! I look foward to reading more about all of you!!

 

[mom2pixies]

Bridget the Brave--love it. She does sound like a fighter who keeps defying the odds and pushing forward! Keep at it, Bridget!!!

So glad she is getting her wish and the whole family gets to go along for the ride! I'll be tuning in....

 

[katieb4]

How fantastic she gets to go and replace memories!! GO BRIDGET!!!!

 

[billwendy]

WOW!!! What an amazing miracle!!! God Does have a plan for her!!! Im a believer in the power of prayer too!!!!

So where are the other 6 kiddos???

 

[maroo]

Wow!!!!

What a precious little girl - a scary journey - and an awesome testimony!!

I have linked you guys on the Wish Trippers thread!!

Thank you so much for sharing your story with us!

 

[brymalis]

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[mysevendwarfs]

Here is the rest of the supporting cast of the Many Adventures of Bridgie the Boo. We are all so excited about her wish trip!

MY SEVEN DWARFS

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DOC- Our 19 year old son, Patrick. He is smart, funny and the leader of the pack. He is great with kids (thank goodness!) and wants to be a doctor. He just finished his first year at Michigan. He is a big Michigan football fan, but we like to remind him Notre Dame raised him and MI just takes his money!

DOPEY- Our 16 year old lovely and very un-dopey daughter, Catherine. She fought the other kids for the “Dopey” dwarf title and being that she made our 7 dwarfs shirts for our last trip “won”. She is a junior honor roll student. Irish dance is her passion!

SNEEZY-Our 13 year old son Danny is in eighth grade. He loves lacrosse, fishing, and is asst. patrol leader of his boy scout troop.

HAPPY-Our “wish kid” Bridget. The Happy name really does fit her. She loves life and is full of fun and always has a smile on her face. She loves zebras, ICarly, Notre Dame, crafts, Kids Kicking Cancer (her martial arts group) and swimming. (She would eat a Happy Meal a day and not much else if we let her!)

GRUMPY-Our 9 year old son, Jack. He really isn’t all that grumpy, but it does fit him more than the others. He has the best laugh in the family and is very creative. He loves soccer!

BASHFUL -Our 4 year old daughter Nora is best described in her own words when I asked her if she wanted to listen to the book on dinosaurs…”I don’t like dinosaurs, I only like princesses and Tinkerbell “ She is in her shy stage and quit all her extra activities because she doesn't want to talk to the teachers/leaders

SLEEPY-Our 17 month daughter, Mary. She is the belle of the ball and center of everyone’s attention. Born in the midst of chaos and stress, she is our ray of sunshine.

MY PRINCE – DH-husband and dad extraordinaire and huge Notre Dame fan. Belle is his favorite princess …lol! This photo was on our 19th Anniversary at DHS.

SNOW WHITE-me, Mom to the clan. I don’t have time for many hobbies as I am busy keeping everyone involved in theirs. I consider myself incredibly blessed to have been married 20 years this June to my best friend and I love being a mom.

Pluto – Our dog Brady, born the day before Mary. I was temporarily insane and brought him home from the school auction. He will not be making the trip!

Thanks for joining us on our journey to the House of the Mouse and GKTW!

 

[Blyssfull]

What a stunning family y'all have! I can't wait to read more.

 

[angeque143]

What a beautiful clan you have...LOVE the 7 dwarfs!! LOL Cant wait to read more!

 

[wishin' on a star]

Thanks for sharing your story! Your family is beautiful. How wonderful that Bridget is getting her wish. You all will have the most amazing time at GKTW and Disney. I can't wait to follow along with your planning!

 

[cogero]

Thank you for sharing your story.

 

[mysevendwarfs]

Thank you so much everyone for the warm welcome!!! Sorry it has taken me so long to post. May is just crazy around here...graduations, final projects, Dr's appointments, Bridget's therapy, etc. I think May is actually busier than the holidays

We are all so excited for our trip. I am a "bit" of a planner when it comes to our Disney trips. Isn't everyone here?!!!! I found that that with a big group having a plan keeps everybody happy and informed. There are fewer disappointments that way! I enjoy the planning even though my family mocks me! My 19 year old said to me the other day "Mom, if you don't finish the grocery list, I am going to take away the Disney boards for one week!!!"

That said, this trip is already proving challenging. We know Bridget needs a lot of sleep and tires easily. Trying to fit in all the fun and enjoy GKTW as well is going to take planning. For those of you who have gone on Wish trips, how much did you plan to hang around the village. It seems like some of the things they have are amazing, ie. Christmas, and I want to be sure Bridget gets to enjoy them. We also, obviously, want to spend time in the parks. My parents took us all to Disney World last year, so there won't be a panic to see everything. As I mentioned, Bridget doesn't remember some of it, so she is particularly excited. Most in our family could go to Disney every month and still be excited!!!!

We have our van confirmation so that is good!!!!Rainbow Connection would have flown us down, but we were worried about Bridget's pressure issues due to her shunts and the weird stuff the cancer is doing. The doctors haven't seen her type of tumor present this way before. We just didn't want anymore variables. Anyway, we thought it would be better to drive. In a lot of ways it is easier with our big group anyway. Packing is a nightmare already, never mind packing for an airplane!!!

We receive our van on June 23, leave June 24 and we return on July 7. It is a much longer trip down there than we have ever done, but we are spending some time on Disney property using my parents DVC points that are due to expire. Thanks Grandma and Grandpa!!! I really didn't want to be stressed out to see everything and give Bridgie enough rest time. We have sandwiched the time at GKTW between our DVC stays so that we could just let Bridget rest in the beginning and at the end (and successfully use the points ). We will stay at BWV for 2 nights, then GKTW, then 3 nights at Saratoga Springs. We are paying for our extra days of the rental van. I was so glad they let us extend without difficulty.

Last time we went we rented the Liberty Stroller for Bridget through Orlando Strollers. It is jumbo, but just amazing. She could sleep in it and stay shaded. I knew that we get a voucher for a wheelchair, but I was worried she wouldn't be able to rest comfortably. Well, I called our wish coordinator and they are paying for it They have been just awesome at every step.

I am struggling with how much to actually do at WDW, ie character meals, dinner shows. It is hard to justify knowing we have meals at GKTW. I am thinking we may do a dinner show before GKTW and that is it. We do want to celebrate DS 14th birthday on July 3 as well. He wants to eat at Teppan Edo, but we are trying to convince him to try something else, maybe McDonalds or Taco Bell...lol.

Does anyone know if the Disney park tickets can be used after your days at GKTW are over? If we used 2 days while at GKTW and left the last day for when we were on property, would that work? I know most Disney passes once initiated have to be used in 14 days, just didn't know if GKTW had specific dates on the tix.

Thanks for joining us!!!!!

 

[mom2pixies]

Does anyone know if the Disney park tickets can be used after your days at GKTW are over? If we used 2 days while at GKTW and left the last day for when we were on property, would that work? I know most Disney passes once initiated have to be used in 14 days, just didn't know if GKTW had specific dates on the tix.

Thanks for joining us!!!!!

Great start--love the family pics and the descriptions of each of your 'dwarves!' Sounds like you guys are going to have a great time at Disney!

From what I understand, Park tix can be used any time within a 2-week span from the first use. So if you used the 3-day park hopper for the first time on Day 1, then it would be good for 13 days after that first date. So, you could use it again on Day 5 and again on Day 13 if you wanted to divide up the days instead of doing Day 1, 2 and 3 of parks. So, to answer your question, yes, I think you can still use your tix after you leave GKTW.

However--and someone please correct me if I'm wrong--but I believe the 'magic button,' only applies for the week you are GKTW. So other 'perks' such as free parking and front-of-line access wouldn't apply on those days you visit the parks outside of the GKTW part of the trip. I believe the button actually has the dates of the wish trip written on it, but I think I read somewhere that you can get special extensions for the button if you see Guest Services at the different parks (or maybe at GKTW itself?).

Can anyone else clarify that?

 

[SueM in MN]

I just happened on your pre trip report.

I hope your wish girl makes some really wonderful memories to replace the ones she lost.
Hope you all have a wonderfully amazing trip.

Great start--love the family pics and the descriptions of each of your 'dwarves!' Sounds like you guys are going to have a great time at Disney!

From what I understand, Park tix can be used any time within a 2-week span from the first use. So if you used the 3-day park hopper for the first time on Day 1, then it would be good for 13 days after that first date. So, you could use it again on Day 5 and again on Day 13 if you wanted to divide up the days instead of doing Day 1, 2 and 3 of parks. So, to answer your question, yes, I think you can still use your tix after you leave GKTW.

However--and someone please correct me if I'm wrong--but I believe the 'magic button,' only applies for the week you are GKTW. So other 'perks' such as free parking and front-of-line access wouldn't apply on those days you visit the parks outside of the GKTW part of the trip. I believe the button actually has the dates of the wish trip written on it, but I think I read somewhere that you can get special extensions for the button if you see Guest Services at the different parks (or maybe at GKTW itself?).

Can anyone else clarify that?

The magic button is only for the actual trip.

Once the GKTW part of the trip is over, you can go to Guest Relations and request a Guest Assistance Card. It won't be the very same front of the line access as with Make a Wish, but it will meet your needs.
You can find out more about Guest Assistance Cards in post #6 of the disABILITIES FAQs thread - follow the link in my signature.

 

[mysevendwarfs]

Great start--love the family pics and the descriptions of each of your 'dwarves!' Sounds like you guys are going to have a great time at Disney!

From what I understand, Park tix can be used any time within a 2-week span from the first use. So if you used the 3-day park hopper for the first time on Day 1, then it would be good for 13 days after that first date. So, you could use it again on Day 5 and again on Day 13 if you wanted to divide up the days instead of doing Day 1, 2 and 3 of parks. So, to answer your question, yes, I think you can still use your tix after you leave GKTW.

However--and someone please correct me if I'm wrong--but I believe the 'magic button,' only applies for the week you are GKTW. So other 'perks' such as free parking and front-of-line access wouldn't apply on those days you visit the parks outside of the GKTW part of the trip. I believe the button actually has the dates of the wish trip written on it, but I think I read somewhere that you can get special extensions for the button if you see Guest Services at the different parks (or maybe at GKTW itself?).

Can anyone else clarify that?

I just happened on your pre trip report.

I hope your wish girl makes some really wonderful memories to replace the ones she lost.
Hope you all have a wonderfully amazing trip.
The magic button is only for the actual trip.

Once the GKTW part of the trip is over, you can go to Guest Relations and request a Guest Assistance Card. It won't be the very same front of the line access as with Make a Wish, but it will meet your needs.
You can find out more about Guest Assistance Cards in post #6 of the disABILITIES FAQs thread - follow the link in my signature.

Thank you mom2pixies! I called GKTW and they confirmed the ticket use and the button. How awesome is it that we will get a "magic button"!!!!

Thanks for the kind wishes SueM! We have used the GAC before. You were very helpful to us on our trip last year with info on the GAC. Disney was incredibly accomodating too. The GAC is stated for 6 people, but our immediate family is 9. The first few days it was helpful, but problematic, because we were always having to do the attractions twice or sending our older kids into the line by themselves. We missed them!!! Doing the attractions more than once was also fatiguing for Bridget, which was the main purpose of using the GAC for us in the first place. The little guys also wanted to be with their big sibs. I finally spoke with the nicest young lady at Guest Services and they helped us out. Disney is just amazing when it comes to customer service!!!

 

[mysevendwarfs]

It has been a crazy week here! I'm a little bit in panic mode trying to get all our plans taken care of. It seems everybody has some medical issue right now. Enough!

I had dd (16) to the ER this week. She hadn't been feeling well. She is actually the one in the family with the weakest immune system. She catches everything. Long story, but she actually had to leave school for a semester because she caugh a virus and it just knocked her down. They finally diagnosed her with Post Viral Fatigue Syndrome. ( Luckily, Bridget rarely catches anything ) They think some of her symptoms may be stress, but we have to go to a cardiologist as well just to make sure. Our appointment is in about 2 weeks.


Bridget isn't eating well at all. She has lost weight her last few visits and I am afraid they may want to put her back on a feeding tube. She hated that! We were at a wedding yesterday and she got really dizzy. I thought I was going to have to take her to the ER as she was acting a little like she does when she had shunt issues or seizures. It turned out she didn't eat anything before we got there I just have to be the food police now. Once we got her something to eat, she bounced back quickly and was a dancing fool at the wedding


As for trip updates:

I have spent a lot of time on the phone trying to upgrade our reservations and get dining reservations! We are going the budget route this trip and decided not to do the Hoop De Doo! We love that show and it is one of our favorite traditions, but couldn't justify it this trip as we went last year. I am taking the girls to Cinderella's Royal Table as Bridget really wants to eat with Cinderella! We will leave DH, the boys and the baby to their own touring plan for that time.

As I mentioned in an earlier post we are using grandma's DVC points to stay a few days before and a few days after GKTW. I have been trying to get into one of the properties close to the parks so we can get "home" quickly if Bridget gets tired. However, it is 4th of July weekend so they are all booked up. I am just going to keep checking!!! We are currently staying at Saratoga Springs and they are opening their new pool the day we get there. The last reservationist put a request to be by the new pool so that should be neat if it works out!

We are driving to Florida for the wish trip. I was too concerned about Bridgie's pressure issues to want to fly. We just felt it added another variable we didn't want to deal with. Plus, who wants to track down 18 shoes at security Rainbow Connection, our wish group, have rented us a 15 passenger van which would seem huge for our family of 9, but DH is very worried about the luggage space. Apparently, he saw the van type they have rented us at a dance competition with my daughter this weekend and there is zero cargo space. We could take out a row of seats, but that leaves us with less seating space than we already usually travel with. We will never take our own van on a Florida trip again as the air konked out on the trip last year and it was 102 and HOT!!! We have 4 car seats, so if the back row is gone, it will be really tight. The car rental company won't let us use the luggage rack we have that sits on a hitch because of liability. With a family of 9, we need at least some cargo space I know it will all work out, but just another thing to figure out. I just hate to call and bug our wish grantors. They have been so incredibly kind and generous already.

I've already started packing if you can call throwing what I find in a basket "packing". I found our Disney pins, swim googles, and leftover glow sticks! I find that packing and getting out the door is the hardest part of traveling. DH and I have an understanding that whatever is said in the last 1/2 hour before departure is forgotten as soon as we are out of the driveway. I guess if the biggest stress on our marriage is packing for vacation we are doing okay . It's actually kind of a routine now. After 20 years, we just apologize in the driveway before we go

Well, thanks for reading and joining us on our journey. We are so excited to share this with our Bridgie.

 

[dancin_princess]

Bridget the Brave - what an amazing little girl. what a beautiful family you have. I hope you get the cargo situation worked out. Thank you for sharing your story with us.