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

[Mom2mitokids]

Mary... I will differently be keeping Lauren in my thoughts and prayers from tonight tell she is fully recovered.

 

[chelleydi77]

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June. We are all so very excited for this opportunity and even more thankful for the Make-a-Wish Foundation!!

 

[that's nice]

Hey everyone...

First off, sorry for being absent for a few days all your threads. I really don't take that lightly. I will be out of town till Tuesday the 15th so I will only be popping in here sporadically.

I wish all the families leaving in the next few weeks have wonderful trips! If nothing else remember to relax and enjoy the time with your family. If something doesn't go to plan, don't worry about it.

Mary, I will be keeping Lauren & her family in my prayers.




Tim

 

[blessedmom4]

Hey everyone...

First off, sorry for being absent for a few days all your threads. I really don't take that lightly. I will be out of town till Tuesday the 15th so I will only be popping in here sporadically.

I wish all the families leaving in the next few weeks have wonderful trips! If nothing else remember to relax and enjoy the time with your family. If something doesn't go to plan, don't worry about it.

Mary, I will be keeping Lauren & her family in my prayers.




Tim

Dear Tim,

I just you, you are such a sweetheart. Catching up on all your news on your thread...CONGRATULATIONS on it all...the part I knew and the part I didn't . I hope everybody visits to see what I am talking about!!!! LOTS going on at your house! Praying everybody is feeling GREAT!!!!

Have Fun!!!!

Blessings,
Judy

 

[blessedmom4]

Dear Mary/Maroo,

WOW, that is a lot to digest about Lauren's surgery. Praying the fmaily has clarity as to what to do for Lauren. I am happy there is a trip to distract her for the time being and asking God to send wisdom as you travel...Maybe this will be the catalyst to "decide" what needs to be done, vs typical daily activites. to everyone who loves Lauren and hugs to her family who have to deal with so much. I do have empathy towards that as well. I am happy you will be starting her CB site back, that is such a comfort for me to have Lisa's.

Blessings,
Judy

 

[tinytreasures]

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June. We are all so very excited for this opportunity and even more thankful for the Make-a-Wish Foundation!!

Welcome Michelle and Madison to the Wish thread

 

[kailatilear]

Sending lots of prayers for Lauren!

 

[Bill_Lin]

We haven't been able to get in at all, i've looked every day. I also wanted breakfast, which makes it a bit more limiting. So I thought Akershus was a good second option.

It won't hurt to try asking when you get there. Ask at the Guest Services office when you first enter MK. It is on the left when you first reach Main Street.Check out our trip report in my signature for how that worked for us.

Bill

 

[mom2pixies]

I keep thinking about Brooke's possible wish trip and I keep coming up with other questions for everyone. Here goes:

1) Do Extra Magic Hours apply to GTKW visitors? I know that GTKW wish kids have a 'magic button' that allows them (and their familes?) access to characaters and rides and shows faster than the average WDW visitor, but just wondering about EMH hours? Just wondering how to work out which park on which day. (Yes, I am already thinking of itineraries--and we don't even know if she will be approved!)

2) Do the GTKW villas come equipped with personal safes or are there safes at Reception to rent? (Just thinking of where to keep valuables--passports, travel docs, meds, etc.) I can't imagine anyone working or visiting GTKW swiping these things, but--call me paranoid, especially after hearing a crazy story from my friend about how she and her husband were scammed out of money when they tried helping someone last weekend--I'd rather be safe than sorry!

 

[brookerene]

I keep thinking about Brooke's possible wish trip and I keep coming up with other questions for everyone. Here goes:

1) Do Extra Magic Hours apply to GTKW visitors? I know that GTKW wish kids have a 'magic button' that allows them (and their familes?) access to characaters and rides and shows faster than the average WDW visitor, but just wondering about EMH hours? Just wondering how to work out which park on which day. (Yes, I am already thinking of itineraries--and we don't even know if she will be approved!)


Technically they don't count...

2) Do the GTKW villas come equipped with personal safes or are there safes at Reception to rent? (Just thinking of where to keep valuables--passports, travel docs, meds, etc.) I can't imagine anyone working or visiting GTKW swiping these things, but--call me paranoid, especially after hearing a crazy story from my friend about how she and her husband were scammed out of money when they tried helping someone last weekend--I'd rather be safe than sorry!

I don't know about this one..I don't think they do in the villas, but otherwise I don't know....Good question... I do know that they don't come is an do daily cleaning service. Although they do drop off gifts.... so wise hiding etc can't hurt!

 

[brookerene]

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June. We are all so very excited for this opportunity and even more thankful for the Make-a-Wish Foundation!!

WELCOME! That sounds like a great wish... You'll find a wealth of info here. I know there are a few PTRs Trs on the Wish.... If you go to the first post you'll find it!

 

[maroo]

just stressed about wdw with 10 months old.. I've been read PTR and TR all night and really can't find any with info.. Will places I made ADR for have high chairs? Kaitlyn is great baby. We can go out for the whole day and she enjoys it, but whole week in the hot.. I just want January to have the best trip because this is a trip of life time for her and I don't when we could go back. If anybody traveled with infant please help me? Do's and don't with a infant. Does the car rental place have car seats?

I feel sure the the places will have high chairs. Disney is so kid friendly!

The car rental place has car seats - and you may want to bring your own, though, for the flight? depending on her age...and well...I don't know. Just to have the one you know she fits in??

I don't have any kids - so this one is hard to answer.

But...there are First Aid stations and Baby Care areas in each of the parks that will carry baby essentials should you forget anything.

We had a great meeting with the MAW grant volunteers tonight! It looks like the plan for GKTW and Disney is in the works for Hannah's wish!

Here are all the long details
http://www.disboards.com/showthread.php?p=40192837#post40192837

Woo Hoo!!! I am heading over there to read soon!!

I have so many questions now that we are starting to actually put this together!

1] Our MAW grant person said she talked to their office, and if we get a letter from Hannah's doctor that we need to have a nurse, then we could likely get one. Hannah requires 24-hour care, and this would give us a chance to have someone watch over her at night so we can all sleep. (Right now I do night nursing, and we use the nurse during the day because of the other kids). My hubby is not keep on that idea, but I am just not sure myself. Has anyone done this before?

2] I know that MAW covers so much financially, but I also know that we will have to bring some spending money too. Can you veterans share what is not covered so I know how much to start saving?

I have to say, this group is such a wealth of info -- thank you all so very much!!

I was actually this "nurse" for Lauren. You probably have a certified nurse hanging with you guys since it appears she has a vent? But I was the nurse for Lauren's trip and took care of her during the night, showers, dressing, etc etc - as much as humanly possible to give her parents a true break. Her Mom certainly helped some, too, but I really tried to give them a break.

MAW paid for everything for me to go.

You definitely want to pick this person carefully - as they will really be around a lot during your trip. I can attest to the fact that you really need to have good chemistry for the trip - to keep from having more of a headache than normal.

It may be hard to find someone that can go, too...we have had a terrible time trying to find someone for this trip with Lauren.

I would also try to come up with some sort of schedule so that she has some "down" time - if she is paid by the state or something, then there are probably rules about this - but in the absence of rules, I would just try to give her some alone time in the parks (if possible) and maybe during the day to rest if she is going to be up all night. By the end of the trip my back was out and I was pretty miserable. Every trip since then, as a nurse, I have tried to take some time every day to rest/recoup from the constant vigilance of taking care of someone besides just me.

My wife, Kim always has a small notepad with her. She is used to taking tons of notes at every doctor/hospital visit of Wendy's. On our trip, at every meal she would record every attraction we had been on, and also caught up with anyone who had been away from us. As she was writing her trip report she would often ask the kids for more details and between them they could always remember what she was looking for.

As far as our pixie dust episode - I would have been thrilled with a quarter of what they did! It was just a surreal experience seeing it become such an incredible event. I have read of other magical moments here on the Dis boards, and just could not believe it was happening to us!

By the way, we want to send thank you notes to Aron, Rusty and Chef Eddie. Should we send them right to the restaurant, or
should we send them to some other address? Does anybody know?

The details were great and you will be so glad that you put all the time and effort into remembering it all.

I totally understand where you are coming from on the massive pixie dust Disney can throw...I think every single wish trip has a magical moment for the family that they were not expecting. Sometimes it is a Disney thing done by Disney CM's...but sometimes it is just a special moment with the family, etc. Disney CM's really do a great job in really trying to make the trip more magical. Especially the "old" CM's - some CM's are just there for a summer job or something, but a lot of them really do "get it" - which is really nice.

I see Chesire Figment gave you the info you were looking for as far as contacting Disney.

Owen's wish pack arrived today, had agood look through it all, he is most excited and its only 2 weeks tomorrow until we go!

Quick question, on the MAW paperwork it says that GKTW will provide only breakfast and dinner meals, I was under the impression we could just eat what we wanted and when? What if we just wanted to stay at GKTW for the whole day, would we have to pay for lunch?

Woo Hoo!!!

You can have a "light lunch" - soup and sandwiches - at the ice cream place. Or Katie's Kitchen is open for more hot food (Boston Market food).

I say eat ice cream for lunch.

Thank you for sharing the link. That was incredibly heartbreaking to read.



I'm glad to be hearing such good reviews, thank you for your input. I guess as soon as you hear one bad thing, you start to second guess things - which I need to stop doing.



YAY!!!

I just read about Cooper, too. I was in tears about that the other day. And I read their wish trip report, too - which was just amazing.

It has taken me two years of doing research on the DIS to learn not to take the opinions on the DIS to heart. People react to different things in different ways and have a variety of expectations. I think you will have a great time at whichever meal you choose.

If you really want to eat in the castle, don't give up on trying to get it. People cancel at the last minute - and even when you get to the parks, you may be able to find a cool CM that would let you eat there anyway.

Wow Maroo - that is a very unique surgery. I do believe a teen at our hospital had it done over this past year. His neck was bent so far over, it looked so uncomfortable. They did decide to straighten it. His worst problem was healing the incision. He ended up needing a wound vac for several weeks, but, seems to be back to baseline now! I pray Lauren has a good surgical experience and that she will be albe to follow her plans for the spring and fall!!

I would love to know someone else that had it done! Especially this front to back kind. Lauren is really uncomfortable.

Thanks for the prayers!! We really, really appreciate it!

Will pray for Lauren...I can't imagine what she's going through and hope that whatever decision she makes that it will be the right one... Wish I was close enough to do her senior photos! although I am sure that whoever did them did a great job... I hope the rest of her senior year is awesome and no matter what choice she makes that she will be able to go to college... we are rooting for her!

You know...she has not really had her senior photos....... We should get on that! She had some taken for the yearbook - but just in the black drape. She needs some "real" ones.

Thanks for rooting for "my" girl! I love that chic!

I am so sad for Coopers family. He fought so hard to go home, I am so glad he made it and was able to drive his car

Mary I will send prayers for Lauren and her family (and you)

Thank you so much!! Prayers for me would be a good idea, too!

Maroo
I am definately praying for Lauren.

Thank you so much!!!

Sending prayers for Lauren.

Thank you so much!!

Good vibes and thoughts and prayers over here for Lauren!

Thank you so much!

Mary... I will differently be keeping Lauren in my thoughts and prayers from tonight tell she is fully recovered.

Thank you so much!

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June. We are all so very excited for this opportunity and even more thankful for the Make-a-Wish Foundation!!

That will be so awesome!!! To have her Dream on the Disney Dream.

Hey everyone...

First off, sorry for being absent for a few days all your threads. I really don't take that lightly. I will be out of town till Tuesday the 15th so I will only be popping in here sporadically.

I wish all the families leaving in the next few weeks have wonderful trips! If nothing else remember to relax and enjoy the time with your family. If something doesn't go to plan, don't worry about it.

Mary, I will be keeping Lauren & her family in my prayers.




Tim

Thanks for the prayers!! Have a BLAST on your trip!

Dear Mary/Maroo,

WOW, that is a lot to digest about Lauren's surgery. Praying the fmaily has clarity as to what to do for Lauren. I am happy there is a trip to distract her for the time being and asking God to send wisdom as you travel...Maybe this will be the catalyst to "decide" what needs to be done, vs typical daily activites. to everyone who loves Lauren and hugs to her family who have to deal with so much. I do have empathy towards that as well. I am happy you will be starting her CB site back, that is such a comfort for me to have Lisa's.

Blessings,
Judy

Thank you so much!! We are getting excited about Disney - and hoping for a great trip fairly free of worries.

Sending lots of prayers for Lauren!

Thanks!!!!

I keep thinking about Brooke's possible wish trip and I keep coming up with other questions for everyone. Here goes:

1) Do Extra Magic Hours apply to GTKW visitors? I know that GTKW wish kids have a 'magic button' that allows them (and their familes?) access to characaters and rides and shows faster than the average WDW visitor, but just wondering about EMH hours? Just wondering how to work out which park on which day. (Yes, I am already thinking of itineraries--and we don't even know if she will be approved!)

2) Do the GTKW villas come equipped with personal safes or are there safes at Reception to rent? (Just thinking of where to keep valuables--passports, travel docs, meds, etc.) I can't imagine anyone working or visiting GTKW swiping these things, but--call me paranoid, especially after hearing a crazy story from my friend about how she and her husband were scammed out of money when they tried helping someone last weekend--I'd rather be safe than sorry!

I am going to do a special EMH post in a second...so I can link it on the FAQ board...

I don't know about the safes....

I am not sure if this is for a firearm? But another Wish Familiy had this issue (husband is a federal agent) and maybe she will PM you...if she is still reading this thread......

If not...I would call GKTW. I really, really think your stuff would be safe - especially if it was not out in the open.

I did not stay in the villa's...so maybe someone that did can pipe in here.

 

[mom2pixies]

No--not a firearm!--although I could see how that would be problematic for those individuals requiring one--I was thinking more of passports. We're Canadian, so we'd need to bring our passports with us, but we don't like to carry them on us if we can avoid it.

Thanks for the info. I'll take a look for the EMH post, for sure!

 

[mom2pixies]

Please don't mind this post and feel free to delete it! This is just a post so my daughter can play with the smilies. She's addicted to watching the bananas dance!

 

[Corrine 1973]

Please don't mind this post and feel free to delete it! This is just a post so my daughter can play with the smilies. She's addicted to watching the bananas dance!

I'm loving it. Tell your daughter I love to see the bananas dance too.


As for safes, there are none in the villa's. I don't know if there are any available to barrow, maybe call them or talk to your cordinator and have them find out. Other wise, maybe a small lock box that is left in your luggage (not in sight) will put you in peace of mind. That being said, we left a phone at our villa when we left (actually forgot to return the phone from Epcot for Kim Possible) and they called us back to tell us we forgot it.

 

[maroo]

Please don't mind this post and feel free to delete it! This is just a post so my daughter can play with the smilies. She's addicted to watching the bananas dance!

awwwww!!!!


to the DIS, sweetheart!

 

[syammt]

I promised an update on Lauren...(sorry, this is long - feel free to skip it - it has only a little to do with Disney)

I was hoping to have a surgery date or something like to report - but no such luck yet.


We met with two different surgeons. Without going in to a ton of detail, they basically said that they thought Lauren's problems with her neck would continue to get progressively worse if we opt to not do the surgery at all. Wheelchair modifications have not worked despite multiple attempts and they don't believe they will work in the future to control her neck curvature.

Lauren is not in a lot of pain, but she is never comfortable in her wheelchair. And the way she sits pushes against her lung and is causing a further diminished lung capacity. She can't really sit through a whole day of school without being really worn out. Fatigue is a major issue for her.

So...status quo really isn't working. For Lauren to continue going to school - including college next year - she will need to have some sort of relief from this.

But the surgery is a big surgery. They would go in from the front of her neck and the back of her neck and break some bones, straighten her spinal cord, add rods and screws to her neck up to C4. C1 is right under the skull and C4 is below that, but not much.

This surgeon has a great reputation and has done countless neck surgeries over the past 30 plus years. He is well known for being conservative in his approach and being a surgeon that takes on tough cases where he basically has to "make it up as he goes along" - But he has never done a case like Lauren's. In fact, he is not sure anyone had done a case quite like Lauren's. Evidently most curves are forward or spondylitic?? heck, something else I can't remember. Lauren is quite unique.

From the people I have talked to - both at this meeting and just contacts in the medical field - it seems like this surgery is normally not attempted for children, because most of those children are very low functioning or have co-morbid conditions that would make surgery like this impossible. Lauren is unique in that she has the potential to go to college and is really in fairly good health. That seems strange to say - but aside from the fact that she can't sit up, has low lung capacity, etc - she really is pretty healthy. She takes very little daily medication, doesn't have any type of seizures or anything like that. She also bounced back well from her last back surgery when they put rods and screws in her back (after the initial complications).

Anyway...the main risk for the surgery is that there is chance that moving the spinal cord back into a straight line will cause a spinal cord injury during the surgery. She would possibly be paralyzed from the neck down. Lauren has very little function in her arms - but she is able to drive herself in her wheelchair with a joystick, type with her thumb, text with her thumb, etc. So obviously this would be something that we would want to avoid. He said the "percent chance" of her having a paralyzing event in surgery was anywhere from 6-12%.

It seems hard to know since they really don't have a good handle on what her disease process is, I guess.

My gut is that the risk would be a bit higher than that - but I am not a doctor - so take that with a grain of salt.

I have faith in a good God that has a plan for Lauren's life and I think that His plans will prevail, no matter what the stats say. We trust that He will work this out for His glory - and frankly He could use anything from her death to a complete and lasting recovery. We trust Him to do that.

They have not decided whether to do the surgery or not. Lauren has a weeks worth of exams, a major paper due Monday and an AWESOME Disney trip (6 more days!!!!!). Lauren decided to put this "in the box" and not think about until she gets home from that trip.

In the meantime - I am hoping I can solicit some specific prayers from anyone inclined to pray for Lauren -

1. That they would make a good, informed decision regarding whether to even attempt the surgery at all. I want them to have a peace about it.

2. That they would either have a peace about NOT seeking a second opinion or that it would be possible to quickly seek a second opinion.

3. Timing - Lauren is graduating this year, has her senior church trip at the end of May and wants to start college in the fall. This surgery has a 2-3 month recovery time assuming no complications - so the timing of the surgery is important. We are hoping she can do all of those thing - graduate with her class, go on her last Chi Alpha trip AND start college with her class in the fall - but that may not be possible. So we are praying for the timing to work out the way it is supposed to.

4. To start praying now for her surgery - that there will be no complications or anything that will cause her further difficulty. This would include her platelet count - because that was the main complication last time that was quite life threatening.

5. For their family - too much to type here, but that her family will be able to cope with another stressor. I have never met a family that has as many stressors as this family.

I appreciate you guys allowing me to share all of this. I am re-starting her Caring Bridge in the next few days and will be providing more information in the days and weeks to come through that. I wont hijack this thread too much for major updates from here on.

Once I restart her Caring Bridge, I will post it here and put it in my siggie so you guys can follow along.

Just wanted to say that I will be praying and will have her added to our prayer list at church. This is the least I can do for all you have done for me and for all of us. I will be watching for the caringbridge in your siggie. I know it has helped me greatly.

 

[jwallaceent]

Hi everyone! My oldest daughter (Madison-8)made her wish today, she wishes to go on a Disney Cruise. They are looking in July or August for a 5 day/4 night cruise on the Disney Dream. It would be sooner but Madison is having surgery (pacemaker replacement) in June. We are all so very excited for this opportunity and even more thankful for the Make-a-Wish Foundation!!

YAY! I hope all goes well with the pacemaker! I will keep watching for the pre-trip!

 

[blessedmom4]

YAY! I hope all goes well with the pacemaker! I will keep watching for the pre-trip!

Jennifer, Here is their PTR link:

http://www.disboards.com/showthread.php?p=40206464#post40206464

 

[jwallaceent]

jennifer, here is their ptr link:

http://www.disboards.com/showthread.php?p=40206464#post40206464

thanks!!