Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[maroo]

We are taking our trip at the craziest time of the year...easter! Has anyone gone at Easter and are there any tips that might help while attending on a high volume week? We would have avoided Easter but then couldn't go until October and with our farm things are never certain.....Also, we'll be celebrating our two other kids birthdays at that time and my hubby's (easter day) & I was wondering if there were any good bakeries for cakes around GKTW, besides walmart? We arrive on my DD's birthday, my DS Nathan's b-day is two days before and I want to celebrate them in FL....
I have thuoght about going to Sea World the day we arrive and celebrating there, but I don't have our plane schedule yet...(5 mo's to go!) I know we'll fly out early but don't know the times.
One last question, I have a friend meeting us there for a day and a half, can she go on the rides with us on with the GAC? I know she'll be a big help on rides that are two people at a time.....

Forgot to answer that last question...

YES - You won't have any trouble with that on a wish trip. They watch that generally to keep large groups of people tagging along on a GAC, but they are not going to give you any trouble with the special wish trip GAC. Usually they just ask how many in your party and send you on your way.

I have "toured" the park with several wish families over the past 2 years and I was an extra person and we never had an issue.

 

[maroo]

EEK!!!

I almost missed these posts!!

Our house has been so crazy this week. I don't know if excitement of Christmas coming or the Disney trip but both girls are crazy hyper. It is kind of the norm for Katie ADHD, but Rheana tends to be more reserved and quiet. Katie had a visit to opthamology today and her surgery to correct her lazy eyes seems to have been a success and her vision has stabilized no new glasses needed which is great news three weeks before Christmas. Tomorrow we will be celebrating Katie's birthday a day early since Daddy has to go to work earlier than usual for training. The kids miss him so much with this overnight shift either they are sleeping or he is and with a 6 day work week right now they do not see much of each other. I am not complaining at least he still has work at this time of year and in this economy but overnight has been an adjustment.
We have also started to make reservations for character dining. At first Katie wanted to "go eat at the big castle in the middle" so since Rick and I will be celebrating our 9th wedding anniversary while we are there, so we thought it would be fun to share our anniversary with the girls there. But Katie then read that the princesses would be there and wanted no part of it, so it will be dinner at the Crystal Palace and Chef Mickey.

I wanted to bring the girls to BBB but do they only do princess makeovers? Katie is not really a princess kind of girls. She likes having her hair and nails done but she more of likely to be the pirate

I think someone answered your question...definitely do the pirate makeover! She will love it!

Thanks for the answer on the check and the tips! I think I'm starting to realize this really isn't a Disney trip but a wish trip and I need to start thinking of it differently. It's been very helpful to have an idea of what to expect. In the past we've always stayed onsite, done at least one sit down meal a day, always taken a midday break at our hotel, and always stayed at Disney for 7 days, we usually spend 3 at the MK alone. But at the same time, we're kind of excited to have the chance to experience Sea World and Universal and GKTW. I think I will need to let go of the sit down Disney meals (maybe do 1 Character meal), if for the sake of time than anything else.

This is very true....

I think most typical families take a break midday - but on a wish trip it is sort of backwards...

Seems like most families stay around GKTW in the early morning and get a good breakfast, see the characters that are there in the morning, play at GKTW, etc and end up going to the parks a little later in the morning or even around lunch. Then they stay for the day...sometimes the fireworks and come back to GKTW a couple of nights earlier to catch the Christmas Party or other party that they want to make sure they experience.

So it is a little backwards...entering the park late and leaving earlier than some of us are used to traveling.

But you have the button and GAC, so the lines are not an issue....which helps a lot!

Thank you so much for taking the time to give you quick tips...those help out tremendously!!! I guess my husband and I really need to take a night and sit down to start some serious planning! I know we will not be able to do everything in one trip, but I do want to make sure we get the most out of our trip.

I have a few questions:

1- I have 3 girls. My wish girl will be 17 at the time of the visit but she has Rett Syndrome. So riding rides will be out for her for the most part unless they are "calm" rides. What do you guys recommend in MK for her? I went when I was 12 and I do not remember much at all...so any advice on something awesome for her would be great. She is, what the schools will tell you, mentally of a 6 mth old or so. She LOVES lights but not strobe lights (has epilepsy) and LOVES characters. She loves animals and absolutely LOVES Barney & friends.

I would highly recommend the book Passporters Open Mouse...mainly because they will tell you which rides have the strobe lights. I know Buzz Lightyear has a strobe light, but I can't remember what other rides have one. Some of the shows will have some, too.

I think you will be happy about how many things she can ride! Lots of slower and calmer rides - more than a typical amusement park.

The book I mentioned above has very detailed information on every ride, but it is a little dated. I would still get it...it will help you a lot...especially with the strobe light issue!

Honestly, she would probably be happy just going around the parks and meeting characters and watching the shows. The rides she can go on will be a bonus.


My 8 year old can ride rides of any kind-she is tall and is a dare devil. Will they allow her to the front of lines if my Wish daughter is NOT riding that ride? What do you recommend for her as a "Must DO".

This is sort of a gray area...someone may disagree with me here...but yes - they will let her use it. She just needs to either take the button or the GAC and tell the CM that the GAC/button belongs to her sister, but that her sister is waiting for her - the CM's really want wish families to get through the "system" quickly so that they can get on with their trip - so they treat the whole family like VIP's.

As far as rides...Roller Coasters - the biggest/fastest is Rock n Roller Coaster (RnR) in Hollywood Studios. Tower of Terror is there, also - both fun and daring.
Animal Kingdom has Expedition Everest, which is a roller coaster that goes backwards in the dark.

MK has the big three - Space Mountain, Splash Mountain (water ride with drop at the end) and Big Thunder Mountain Railroad (a calmer coaster, but still fun).

Epcot doesn't really have any major ones...Mission Space has a side that spins more and that is fun! Test Track...I guess that could be considered more fast paced.

Soarin' is a do not miss for anyone that can ride it!!!

My 4 year old is a Toy Story freak and loves Princesses too. Anything Disney and all of my girls are finatics. I am curious as to what is a Must so we can plan accordingly.

Make sure you ride Toy Story (at Hollywood Studios) early in the day so that you can ride it again and again, even if your arms hurt. You may want to take a break from it and come back to it later. For me...3 or 4 times in one day is about all I can handle before my arm starts hurting from the shooting game and my 2nd ride is usually my best score. That is a great ride! I used my Give a Day/Get a Day fastpasses on it and rode it a bunch of times on my last trip.

Make sure they go to the Princesses and Fairies meet place - it is back in Toon Town right now...but check when you get to the MK.


2- Do you recommend any Character Dining that gives you the most Characters visiting? Which Character Dining do you like best and why? We would like to have one dining experience for the girls to remember.

Honestly...the character dining is pretty fast moving at most of the restaurants...especially during a busy time. I would pick the restaurant based on the characters they want to see...but keep in mind that your button/GAC works on character lines and you can really see all of them i the parks without really waiting very long at all. And they usually spend a good amount of time with wish families.

I have heard of a few stories a while back where 1900 Parke Fare was doing some special meet and greets after the Dinner time for a couple of wish kids...but that is completely random and you can't count on it at all.

Just have them look at the opportunities and vote. I would skip the castle unless they are just really wanting to eat there...the food is crummy (in my opinion ).


3- Which other parks are awesome for my girls? I don't even know what parks are all there... I guess I need to research that as well! YIKES I am so overwhelmed!!!

Keep in mind you can't do it all...really...just have each member of your family pick the two things they want to do in each park. On our trip we intentionally left out Universal because Lauren could not ride much there...but we regretted that later when I found out how awesome they are for wish families (front of the line VIP access). We also never even got to Epcot or AK on our trip - so we are planning a trip back.

I would pick three parks they really want to see and pick 2 things per family member that are their must do's - do those first and then fill in the rest of the day with more things on their list.


4- What is the Big Give I keep hearing about? I am curious as to what that is and how it works?

Let me answer this in a bit...I have a patient...I will come back to this...
Edited to add:... Looks like someone copied the post I wrote a while ago about it...that is basically the gist of it.


Thank you for your time again....

 

[shruley]

1- I have 3 girls. My wish girl will be 17 at the time of the visit but she has Rett Syndrome. So riding rides will be out for her for the most part unless they are "calm" rides. What do you guys recommend in MK for her?

In the MK I would say It's A Small World is tame, Peter Pan goes in the air but is pretty tame, Winnie the Pooh is lots of fun, Jungle Cruise, Country Bear Jamboree (this show is SO inappropriate, LOL), the Riverboat, the Hall of Presidents is about as calm as you get! Monster's Inc. is really cute, just a show to watch. Tomorrow Land Transit Authority is always good for a break and a nice, cool ride.

My 8 year old can ride rides of any kind-she is tall and is a dare devil. Will they allow her to the front of lines if my Wish daughter is NOT riding that ride? What do you recommend for her as a "Must DO".

She will probably want to do all the Coasters...the ones at Disney aren't very wild. In the MK, the 3 Mountains...Space, Splash, and Big Thunder. Make sure to do Rock and Roller Coaster and Tower of Terror at Hollywood Studios, both wonderful. Animal Kingdom also has a great Coaster, Everest.

My 4 year old is a Toy Story freak and loves Princesses too. Anything Disney and all of my girls are finatics. I am curious as to what is a Must so we can plan accordingly.

Both of the Toy Story rides (MK and HS) are excellent. You'll want to ride both, multiple times! If you want to do a Princess meal, we really enjoyed our Princess meal in Norway. Really good time with the Characters.

2- Do you recommend any Character Dining that gives you the most Characters visiting? Which Character Dining do you like best and why? We would like to have one dining experience for the girls to remember.

We love Chef Mickey's- we do it every trip! The best chance of getting the big 5 all together in one dinner! We really like the Princess meals in Norway. Eating in the Castle is cool, too, but spendy and hard to get! If you like Winnie the Pooh, Crystal Palace is a good meal.

3- Which other parks are awesome for my girls? I don't even know what parks are all there... I guess I need to research that as well! YIKES I am so overwhelmed!!!

Epcot is the least favorite of my girls...BUT they do have one of the best rides on Property...Soarin'. I think on our trip with 3 days, we are skipping Epcot all together. Even when I took the girls at age 6 and 3, neither of them really liked much at Epcot. With what you mentioned above, I think you need to do Hollywood Studios...they have an AWESOME Toy Story ride, geat Princess shows (Belle and Ariel), and thrill rides for the daredevil.
4- What is the Big Give I keep hearing about? I am curious as to what that is and how it works?

I'm not sure how it works, hopefully someone else will enlighten.

 

[Mom2mitokids]

Thank you so much for taking the time to give you quick tips...those help out tremendously!!! I guess my husband and I really need to take a night and sit down to start some serious planning! I know we will not be able to do everything in one trip, but I do want to make sure we get the most out of our trip.

I have a few questions:

1- I have 3 girls. My wish girl will be 17 at the time of the visit but she has Rett Syndrome. So riding rides will be out for her for the most part unless they are "calm" rides. What do you guys recommend in MK for her? I went when I was 12 and I do not remember much at all...so any advice on something awesome for her would be great. She is, what the schools will tell you, mentally of a 6 mth old or so. She LOVES lights but not strobe lights (has epilepsy) and LOVES characters. She loves animals and absolutely LOVES Barney & friends.

My 8 year old can ride rides of any kind-she is tall and is a dare devil. Will they allow her to the front of lines if my Wish daughter is NOT riding that ride? What do you recommend for her as a "Must DO".

My 4 year old is a Toy Story freak and loves Princesses too. Anything Disney and all of my girls are finatics. I am curious as to what is a Must so we can plan accordingly.

2- Do you recommend any Character Dining that gives you the most Characters visiting? Which Character Dining do you like best and why? We would like to have one dining experience for the girls to remember.

3- Which other parks are awesome for my girls? I don't even know what parks are all there... I guess I need to research that as well! YIKES I am so overwhelmed!!!

4- What is the Big Give I keep hearing about? I am curious as to what that is and how it works?


Thank you for your time again....

I think everyone has given you great advice. #2..I will say is you don't have to do a character dining to see the Princesses. The front on line pass lets you see them all. They even spend extra time with wish kids. When we went for my youngest on her wish trip, we went to see the Princesses and unfortunately the blue Princess(Cinderilla) wasn't making an appearance that day as she was in the castle. When they found out we were on a wish trip they went and got her for us. We were in there for about 45min with all the Princesses. Unfortunately..by the time Cinderella came..Kylee was so tired and cried the whole time. I felt horrible.


Big Give.. copied it from front page...

The Big Give

--------------------------------------------------------------------------------

This is a frequently asked question...so I am going to try to address it and link it on the second post for later reference...

The Big Give was inspired by Oprah's Big Give (the TV show). It is a group of ladies and men on the DISboards that make custom clothes for families that need some pixie dust. It started with an active DISer that lost a son in a drunk driving accident only days after returning from Disney World. When it was time for their family to go back to Disney, the DISboutiquers made the family clothes to help make their trip extra special.

This first Give went so well, that they have continued the tradition. Now they mainly select Wish Families.

The Big Give is not in any way affiliated with MAW, Disney, GKTW or even officially by the DISboards. It is just a group of very kind ladies and men that just want to bless families that they come to know on the DIS. It is a completely volunteer thing.

The organizers try to include every single MAW family that they "meet" and get to know on the DIS. (I am not an organizer - Lauren was actually a recipient and I now try to give back to future Gives.)

However, it is impossible to include every family. They have to have a good amount of time to organize it (so if your trip is right around the corner, then they would not be able to do one). And these ladies have families, etc and sometimes life just gets in the way of being able to organize during certain times of the year, vacation, illness, etc, can all factor in to whether they can do a give at any given time.

Anyway...You may see the term "Big Give" in Pre-Trip reports and occasionally on the Wish Trippers thread...and that is what it means!

If you have any questions about it, please let me know!

 

[Mom2mitokids]

Hello everyone....

We just got home tonight from Juliana's Wish Trip!!!!! I cannot believe how fast 7 days go. Ummm... I take that back, I do know how fast 7 days go- especially while you are in Disney.

I have a few ideas in my head that I wanted to get out before I forget them. These are only my opinion so if something wont work/will work better for your family, please follow your instincts.

1) GKTW is an amazing place. There is so much to do there and the whole village is catered for kids. Make sure you set time aside to 'hang' out and explore all the village has to offer. We are doing Christmas night, but that's about it. Korissa just wants to do the parks. Oh...we are doing the horseback riding. It was sooo cold last time and we didn't get to do this.

1 b.) Don't wait for the last day to place your star.... (like we did) if you do it in the middle of your trip, you will be able to see it in the 'sky' before you leave.We did it midweek. Sorry you didn't get to see Ana's star before you left

2) Even with the 'button' you WILL NOT see everything. Time just melts away while you are in the parks. I know it has been said before, but make a list of 1 or 2 attractions that each member of your family MUST do... leave room for characters... there are plenty of those to see. This is so true.

3) WDW- Sit-down meals (especially character meals) take 1 1/2 hours minimum from the time you check in. Even CS meals take quite a while. If there is a lunch you can pack..even PP&J that helps with time.Do you know if you can get a sack lunch from GKTW? I guess we can also go to Walmart and get what we need to make some lunches. I know we will be eating dinner at the theme parks everynight since they are open later.

4) PLEASE don't be shy with showing CMs the GAC card- even with characters. It took us a few days to feel comfortable doing it. It does help speed things along. Some CMs really help with this and some seem less informed. Don't get discouraged.Korissa is very shy, but she will have no problem showing off her card. With Kylees wish..we had a hard time, but like you..we got use to doing it. Just think what these kids goes through and it makes it easier.

5) At SeaWorld- we thought the Dolphin show blew away Believe (the killer whale show) Ever since the accident and the birth of a new killer whale, the show is nothing like it used to be. We felt like we needed to see Believe though. So sad that the Believe show isn't the same. Kylee's wish was to go to Disney World, but it was Sea World that all she talks about. Sea World will also be big for Korissa as she is all into dolphins. Her main wish was to swim with the dolphins. Hoping to get some pixie dust from there and that she will get to have a private time with the dolphins.

6) SeaWorld, don't forget Wish kids get to feed the dolphins and you don't have to wait in the long line. Ask a SeaWorld employee where to go and they will get you to the right area. The dolphins are fed at certain times... check the schedule on the park map when you walk into the park.

7) If you are paying OOP for character meals, breakfasts are much cheaper than dinners. But you can eat a great breakfast at GKTW every morning starting at 8. We will be eating at GKTW every morning

8) SW & WDW are about 25-30 minutes from GKTW. They are both about 10-12 miles but there is traffic and many lights.The last time we were just about to Sea World and we forgot Kylee's handicap placecard, so we had to turn around and go back and get it. That was a long drive

9) It takes AT LEAST 45 minutes from the time you pull into the MK parking lot till you walk into MK. Plan accordingly.

10) Park hopping- It is really tough to park hop and it is really time consuming. If you must park hop, I'd hit AK in the AM and DHS in the PM. Or hit a park in the PM that is staying open late.

11) You CANNOT see everything in Epcot in one day. It is nearly impossible. Once again. Pick a few attractions and if you are doing good on time, add a few more. Walking around the world takes a lot of time in itself.This was the one park we were going to try to hop parks. We were going to go to Animal Kingdom in the morning and then Epcot in afternoon. The kids just want to go on the tram and the rollercoaster st animal kigdom then we would head to Epcot. Since Epcot opens till 9pm..do you think that would work? We never been to Epcot, so we want to see it.

12) When people tell you to bring an extra suitcase or duffle bag... DO IT! If you are flying on Southwest, you get 2 bags a person but if your suitcase is 51 lbs they will charge you for it. I agree with the suitcase. On our last day we had to go to an outlet and buy one. Not sure on airline we are getting yet.




This is all I can think of at the moment... I'm spent!


to all the new Wish families!!!!

Once I start my TR I will post the link here!

Thank you Tim for writing this all out.

 

[Happy Dreams1]

Wow! I am overhwelmed by the many new wish families on this thread!
Still haven't heard back from MAW

 

[that's nice]

Thank you Tim for writing this all out.

no problem.....

Do you know if you can get a sack lunch from GKTW? I guess we can also go to Walmart and get what we need to make some lunches. I know we will be eating dinner at the theme parks everynight since they are open later.

They don't do bag lunches but I guess you could always order Katies Kitchen the day before and bring it with you the next day? That won't help if you are in the parks the day before though. Best thing to do is order 1 CS meal for 2 people. Most meals are big enough for 2 people to split. Plus eating like this leaves room for a snack after!

So sad that the Believe show isn't the same. Kylee's wish was to go to Disney World, but it was Sea World that all she talks about. Sea World will also be big for Korissa as she is all into dolphins. Her main wish was to swim with the dolphins. Hoping to get some pixie dust from there and that she will get to have a private time with the dolphins.

We didn't have any private time but I think if you asked someone at SW they could help arrange something. I'd think of calling ahead of time. The worst that can happen is they say no.

This was the one park we were going to try to hop parks. We were going to go to Animal Kingdom in the morning and then Epcot in afternoon. The kids just want to go on the tram and the rollercoaster st animal kigdom then we would head to Epcot. Since Epcot opens till 9pm..do you think that would work? We never been to Epcot, so we want to see it.

If you are in and out of AK by 11 and stay at Epcot till close you might have enough time in Epcot. There is so much to see and shows in each country, you could spend 2 days just in the countries and still not see everything.

 

[that's nice]

awesome tips!!

I have put a link to this post on the 2nd post of the thread for easy access by future families! Great list!!

So glad you had a good time!

Thanks Mary.

I'm sure I will come up with a few more when I write my TR...

We are sad it is already over but we did have an amazing time.

 

[katieswish]

We just came home from an event with A wish come true family. The girls got to make amazing Christmas ornaments and got their faces painted. Next weekend they are having Breakfast with Santa for their wish families my girls were so excited to hear about the breakfast. I have to say our local wish granters are a group of amazing people. Katie was thrilled when they sang happy birthday to her before we went home

 

[nursekimber]

Kaleah Ruffin Pre Trip report

Hi we're the Rufffin Family; Kim (mom), Jon (dad), Corrine(daughter), Alexis(daughter), Kaleah(wish child), Kalani(son)

I did a short pre trip report.(Because I kept procrastinating) We leave for GKTW on 12/21/10!!!!!
I have been so moved by all of the wonderful families here, I often think of and pray for the families.

Hi,
I have been procrastinating beginning our report but since our MAW trip is just about two weeks away I thought I should really get to it!
Our family characters are (me) Kim, DH Jon, DD Corrine 20 (junior at OSU GO BUCKS!), DD Alexis 13, DD Kaleah 3 Wish Child, DS Kalani 2.

Kaleah was 8 months old when she joined our family as our foster daughter. Her brother, Kalani joined us a few months later. They were both shaken babies, at four weeks old Kaleah had suffered several broken bones including a serious skull fracture and ribs; she was abused again at four months old. This time she had new brain bleeds and a fractured femur. Her doctors didn't think she would survive a week, but she's a fighter! She was diagnosed with microcephaly (her head circumference is smaller than normal due to her brain not growing normally from the head trauma), CP- spastic quadriplegia, cortical visual impairment, HTN, Seizures, and Dysphasia. She’s non verbal and has a Gastric/Jejunum feeding tube.
Her first prognosis was grim, the doctors said we would be lucky if she lived to be 4 or 5 years old, she’ll be 4 in April! She had constant seizures and episodes called brainstorming. She was so tiny and cried all the time, when we held her the crying often got worse. Any noise from a cough or sneeze would send her into a frenzy. She became over stimulated by touch, noise or lights. We wondered if we would be able to do anything that would calm her. One night she was crying and as usual nothing we were doing helped. A baby commercial came on and “Silent Night” was playing, she stopped crying instantly. The commercial went off and the crying began, we reversed the show and played it again...no tears! We began playing “silent night” and other Christmas Carols and she loved it!
Slowly we got to be able to hold her without it causing her to brainstorm. But her health was getting worse because she was getting pneumonia every month because she was a silently aspirating, even though we suctioned her by mouth and nose almost constantly. In November of 2008 she had a trach placed and that did wonders. She hasn’t had pneumonia since! In 2009 she started to have kidney problems, she had VUR, she wasn’t urinating well and the urine was backing up into her kidneys causing damage. She underwent treatment and now is straight cathed every 3-4 hours. They doctors wanted to do a procedure called a vesicostomy but we are trying to prevent it from happening, so far the cathing is working very well.
We are so blessed right now because as of November 20, 2010 the children were adopted and ours forever!
More soon…

 

[maroo]

Here is a link to a new wish trip on the pre-trip reports page!

katieswish (Katie) Wish Trip A Wish Come True/GKTW Jan 2011

 

[maroo]

Wow! I am overhwelmed by the many new wish families on this thread!
Still haven't heard back from MAW

Aw! I hope you hear from them soon! When is your "6 weeks" over? When you can call them and check on it?

Thanks Mary.

I'm sure I will come up with a few more when I write my TR...

We are sad it is already over but we did have an amazing time.

I am so glad you had a good time!!

We just came home from an event with A wish come true family. The girls got to make amazing Christmas ornaments and got their faces painted. Next weekend they are having Breakfast with Santa for their wish families my girls were so excited to hear about the breakfast. I have to say our local wish granters are a group of amazing people. Katie was thrilled when they sang happy birthday to her before we went home

That sounds like fun!!! Happy Birthday, Katie!

Kaleah Ruffin Pre Trip report

Hi we're the Rufffin Family; Kim (mom), Jon (dad), Corrine(daughter), Alexis(daughter), Kaleah(wish child), Kalani(son)

I did a short pre trip report.(Because I kept procrastinating) We leave for GKTW on 12/21/10!!!!!
I have been so moved by all of the wonderful families here, I often think of and pray for the families.

Hi,
I have been procrastinating beginning our report but since our MAW trip is just about two weeks away I thought I should really get to it!
Our family characters are (me) Kim, DH Jon, DD Corrine 20 (junior at OSU GO BUCKS!), DD Alexis 13, DD Kaleah 3 Wish Child, DS Kalani 2.

Kaleah was 8 months old when she joined our family as our foster daughter. Her brother, Kalani joined us a few months later. They were both shaken babies, at four weeks old Kaleah had suffered several broken bones including a serious skull fracture and ribs; she was abused again at four months old. This time she had new brain bleeds and a fractured femur. Her doctors didn't think she would survive a week, but she's a fighter! She was diagnosed with microcephaly (her head circumference is smaller than normal due to her brain not growing normally from the head trauma), CP- spastic quadriplegia, cortical visual impairment, HTN, Seizures, and Dysphasia. She’s non verbal and has a Gastric/Jejunum feeding tube.
Her first prognosis was grim, the doctors said we would be lucky if she lived to be 4 or 5 years old, she’ll be 4 in April! She had constant seizures and episodes called brainstorming. She was so tiny and cried all the time, when we held her the crying often got worse. Any noise from a cough or sneeze would send her into a frenzy. She became over stimulated by touch, noise or lights. We wondered if we would be able to do anything that would calm her. One night she was crying and as usual nothing we were doing helped. A baby commercial came on and “Silent Night” was playing, she stopped crying instantly. The commercial went off and the crying began, we reversed the show and played it again...no tears! We began playing “silent night” and other Christmas Carols and she loved it!
Slowly we got to be able to hold her without it causing her to brainstorm. But her health was getting worse because she was getting pneumonia every month because she was a silently aspirating, even though we suctioned her by mouth and nose almost constantly. In November of 2008 she had a trach placed and that did wonders. She hasn’t had pneumonia since! In 2009 she started to have kidney problems, she had VUR, she wasn’t urinating well and the urine was backing up into her kidneys causing damage. She underwent treatment and now is straight cathed every 3-4 hours. They doctors wanted to do a procedure called a vesicostomy but we are trying to prevent it from happening, so far the cathing is working very well.
We are so blessed right now because as of November 20, 2010 the children were adopted and ours forever!
More soon…

Bless your heart!! How awesome that they have a forever family!

I hope you guys have a wonderful time on your trip!!

 

[maroo]

What is the Big Give??

This is a frequently asked question...so I am going to try to address it and link it on the second post for later reference...

The Big Give was inspired by Oprah's Big Give (the TV show). It is a group of ladies and men on the DISboards that make custom clothes for families that need some pixie dust. It started with an active DISer that lost a son in a drunk driving accident only days after returning from Disney World. When it was time for their family to go back to Disney, the DISboutiquers made the family clothes to help make their trip extra special.

This first Give went so well, that they have continued the tradition. Now they mainly select Wish Families.

The Big Give is not in any way affiliated with MAW, Disney, GKTW or even officially by the DISboards. It is just a group of very kind ladies and men that just want to bless families that they come to know on the DIS. It is a completely volunteer thing.

The organizers try to include many MAW families that they "meet" and get to know on the DIS. (I am not an organizer - Lauren was actually a recipient and I now try to give back to future Gives.)

However, it is impossible to include every family. They have to have a good amount of time to organize it (so if your trip is right around the corner, then they would not be able to do one). And these ladies have families, etc and sometimes life just gets in the way of being able to organize during certain times of the year, vacation, illness, etc, can all factor in to whether they can do a give at any given time.

Anyway...You may see the term "Big Give" in Pre-Trip reports and occasionally on the Wish Trippers thread...and that is what it means!

If you have any questions about it, please let me know!

 

[LindaBabe]

It's that time again!

Fairy Grandma Linda is going to Disney world and Disney Land in January.

If you would like post cards sent to your wish kids, please pm me with your wish child's name and SNAIL mail addy - if I have time, I will also send to their siblings. Please put wish postcard in the subject line!

 

[maroo]

I just revised the answer to the Big Give question...

I wrote that answer quite a while ago...when we had a lot fewer wish families on the DIS...and there was a time when they were able to include almost every single wish family they "met" on the DIS because there weren't quite as many active DISers going on wish trips.

But at this point, we have a lot of new families on the DIS - which is a good thing - a great thing, really - I love that our community here is growing!...

But it means that The Big Give folks really can't possibly include every family...

So I revised my answer to that question a little to reflect that...I just wanted to explain that, since I just posted the answer again...

The Big Give is a wonderful thing and they really try to include as many families as possible. If you are reading this and are interested in helping with The Big Give (the more that help, the more families they can include) then PM me and I can send you information about how you can get involved in sending wish families pixie dust for their trips. You don't have to know how to sew.

 

[Mom2mitokids]

Please send a little prayer that we will get some pixie dust. I just called Sea World to see if Korissa can have a private session with the dolphins after the dophin show and also to see if we can get a discounted ticket for Ashlee. Waiting for a call back. I also called Universal Studios to see about a discounted tickets. They told me to write a letter and send it to them. The letter is going out today. I had no luck at Disney World though.

 

[kailatilear]

Please send a little prayer that we will get some pixie dust. I just called Sea World to see if Korissa can have a private session with the dolphins after the dophin show and also to see if we can get a discounted ticket for Ashlee. Waiting for a call back. I also called Universal Studios to see about a discounted tickets. They told me to write a letter and send it to them. The letter is going out today. I had no luck at Disney World though.

Prayers for pixie dust coming your way.

 

[Glo's wish]

It's that time again!

Fairy Grandma Linda is going to Disney world and Disney Land in January.

If you would like post cards sent to your wish kids, please pm me with your wish child's name and SNAIL mail addy - if I have time, I will also send to their siblings. Please put wish postcard in the subject line!

Linda- It's so great that you do this for the kids! You put a huge smile on my kids' faces when they received them. They still hang on the refridge!!!!

 

[jj0plin]

I heard back from MAW yesterday! They just called to let me know that they received my HIPAA forms and were sending them on to the oncology office. They also asked about Elliot's siblings and for all of our contact numbers. Not much of a call, but it sure was exciting to see "Make A Wish" on my caller ID!

I started a PT Report Elliot's Wish Trip - the Premature Pre-Trip Report!

 

[my2girlsrock]

It's that time again!

Fairy Grandma Linda is going to Disney world and Disney Land in January.

If you would like post cards sent to your wish kids, please pm me with your wish child's name and SNAIL mail addy - if I have time, I will also send to their siblings. Please put wish postcard in the subject line!

This is SOOOO nice of you to do this .... I am sure every child that gets one is thrilled!!!