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

[yeti5353]

.

We leave a week from tomorrow.

Any suggestions, recommendations that are a must there?[/QUOTE]

eat lots of ice cream at GKTW even for breakfast. let the kids eat lots and lots of ice cream. Mine are still in awe of that.

Spend time at GKTW and go to a couple parties if you can

be sure and take the surfing photo at GKTW pool

have a plan for the day so you know what you want to do but dont get rigid and let the fun just happen.

take lots of photos and really take advantage of the disney photo pass and gets lots of full family photos.

do rediculous stuff your kids know you just dont do, like let them get a giant stuffed animal, or what ever

dont forget self care for you, try out the jaccuzi bath tub, do what ever you need to do to get enough sleep

[Cassondra]

I just signed us up to do the fish extender exchange. Any ideas for gifts? There are a lot of participants and we are on a budget. Any ideas would be appreciated! Counting adults there are already close to 60 people participating.

[KaylaM]

Originally Posted by yeti5353

.

We leave a week from tomorrow.

Any suggestions, recommendations that are a must there?

eat lots of ice cream at GKTW even for breakfast. let the kids eat lots and lots of ice cream. Mine are still in awe of that.

Spend time at GKTW and go to a couple parties if you can

be sure and take the surfing photo at GKTW pool

have a plan for the day so you know what you want to do but dont get rigid and let the fun just happen.

take lots of photos and really take advantage of the disney photo pass and gets lots of full family photos.

do rediculous stuff your kids know you just dont do, like let them get a giant stuffed animal, or what ever

dont forget self care for you, try out the jaccuzi bath tub, do what ever you need to do to get enough sleep[/QUOTE]

Some great ideas, and thank you so much. I am sure other parents will appreciate these too.

Unfortunately, we probably won't do ice cream. My daughter can no longer have it, and she loves it, so I can't eat it since she can't. I just don't have the heart to do so in front of her.

It is just her and I going!

I plan to take a ton of photos (I am a photographer). Never heard though of the photo pass. Looking forward to finding out what that is. I think I have seen that word in a few places. I want to get a lot of photos of my daughter and I. It's not too often we get to unless I set something up for us.

Surfing photo... Sounds fun! I will definitely look into that.

I am trying to find out EVERYTHING that is happening so we can pick and choose what we want to do. I have already figured out which parks for the most part we want to go to. I am also trying to find out where all Mickey is going to be, and at what parks, etc. My daughter is in LOVE with Mickey!

My daughter will love the jacuzzi tub, but yes, I will definitely plan on using it just for me too.

Looking forward to Thanksgiving day. They celebrate Christmas instead of Thanksgiving, but with a whole Thanksgiving feast.

Thanks!!

If anyone else has any other ideas/suggestions/must do, please do list.

[jas792]

i cant figure out how to do this -- i want to write a ore trip report for wish but dont know where to find it to write thank you

[KaylaM]

My computer is acting weird tonight on this site.

I am wanting to do a pre trip report as well, so I figured when I am ready I would click on someone else's pre trip report and see where they started it from.
Not sure if it will work...

Good luck! Looking forward to reading it.

BTW.. what all is included in a pre trip report?

[kalimom6]

Originally Posted by KaylaM

My computer is acting weird tonight on this site.

I am wanting to do a pre trip report as well, so I figured when I am ready I would click on someone else's pre trip report and see where they started it from.
Not sure if it will work...

Good luck! Looking forward to reading it.

BTW.. what all is included in a pre trip report?

I have been reading a TON of pre-trip reports from page one of this thread. I think there is also a link on the 2nd post telling how to do it.
We leave in 3 weeks so I have been loving all of you questions. The the trip reports, I have seen quite a few of the surf photos and that is a MUST for us. Also, as for the ice cream, I remember reading somewhere, maybe the GKTW site, that the ice cream shop has many different kinds, dairy free, soy free, sugar free, etc. So you may want to check it out, unless it's a different reason
Something else from your previous post caught my eye so I am going to have to submit this one and go back and read

[kalimom6]

Hmmm, I can't remember but I did notice major typos in my last post
Read my PTR, click on link in my siggy. It's definitely not as in depth as others and I took a break this week from planning so I need to update. I have a notebook with lists of what attractions we want to go to, times they open/close, how far from village they are, and all of the village entertainment so we can have somewhat of a schedule.

From everyone that has stayed at GKTW, I want to know what evening activites are a MUST. As of now, we are planning on being at the village for the majority of the evenings. But just in case something comes up, what night would be ok to skip. We arrive on Sat. Dec. 1 and we'll stay there the rest of the day. We leave on Fri, Dec. 7 in the afternoon.

I just now realized that I could scroll down as I am repying to the thread and read the last few posts

KaylaM-I PM'd you

[KaylaM]

Originally Posted by kalimom6

I have been reading a TON of pre-trip reports from page one of this thread. I think there is also a link on the 2nd post telling how to do it.
We leave in 3 weeks so I have been loving all of you questions. The the trip reports, I have seen quite a few of the surf photos and that is a MUST for us. Also, as for the ice cream, I remember reading somewhere, maybe the GKTW site, that the ice cream shop has many different kinds, dairy free, soy free, sugar free, etc. So you may want to check it out, unless it's a different reason
Something else from your previous post caught my eye so I am going to have to submit this one and go back and read

She is g-tube fed, but over the years, she has gone through phases where she wants to "taste" eat a little bit here and there by mouth, which one was ice cream. That has always been the one thing she always ate the most of when in the mood. Last spring, we tried and she couldn't handle it due to a year ago, we found out that if her vocal cords get too wet (from saliva, liquids, crying, drainage) they cause her to do this weird breathing, which can be a problem at times and nothing helps to fix it until her vocal cords are dried up and back to normal. O2 doesn't even help, so. So last spring when we tried, it wasn't a good thing and I know she was disappointed. I can't go through that again. If I can get her to try something this week at home like yogurt, and I see she does fine and she is interested, then I might try. Otherwise, no. .. I would love to though! I would love to have us go and get some for her to enjoy like she has in the past.

However, she hasn't been able to go swimming since last spring (only once then) and so I can't wait to take her there. Even if its just the jucuzzi tub. She will love it!

Thanks!!!

I haven't seen any of the surf photos!

[kalimom6]

Originally Posted by KaylaM

She is g-tube fed, but over the years, she has gone through phases where she wants to "taste" eat a little bit here and there by mouth, which one was ice cream. That has always been the one thing she always ate the most of when in the mood. Last spring, we tried and she couldn't handle it due to a year ago, we found out that if her vocal cords get too wet (from saliva, liquids, crying, drainage) they cause her to do this weird breathing, which can be a problem at times and nothing helps to fix it until her vocal cords are dried up and back to normal. O2 doesn't even help, so. So last spring when we tried, it wasn't a good thing and I know she was disappointed. I can't go through that again. If I can get her to try something this week at home like yogurt, and I see she does fine and she is interested, then I might try. Otherwise, no. .. I would love to though! I would love to have us go and get some for her to enjoy like she has in the past.

However, she hasn't been able to go swimming since last spring (only once then) and so I can't wait to take her there. Even if its just the jucuzzi tub. She will love it!

Thanks!!!

I haven't seen any of the surf photos!

Elsa was a g-tube kid too. I have a friend who's daughter has had many ups and downs and she is 6. Finally, after 2 years of NPO, she is able to eat again, but still gets nutrients via tube at night.

[blessedmom4]

CONGRATULATIONS to all those leaving in a few short days/weeks. It WILL be the experience of a lifetime

Originally Posted by Momtokcc

We have been back from our trip for two weeks now and it was so amazing. So much more than I could have ever imagined!! I think Cade smiled more in those days we were there than I have ever seen him smile. It was definately magical for him. I am going to try to do a trip report.

Things have been very busy since we got back. Cade had a new MRI of his brain - some changes, but nothing major. An appointment with new GI doctor to see if we can make some improvements with the things going on there. A regular pediatrician appt b/c he got sick - thankfully it wasn't anything major.

Hello to everyone new! Can't wait to "meet" all of you!

Welcome back, so happy Cade is doing as well as he can. AND that he had fun!

Originally Posted by jas792

i cant figure out how to do this -- i want to write a ore trip report for wish but dont know where to find it to write thank you

Originally Posted by KaylaM

I am wanting to do a pre trip report as well, so I figured when I am ready I would click on someone else's pre trip report and see where they started it from.
Not sure if it will work...

Good luck! Looking forward to reading it.

BTW.. what all is included in a pre trip report?

Go to this link, look on the left hand side (near the top) where you typically see post reply and click on start new thread.

Tell us about yourself, your family, your Wish child, pictures..why a wish, what organization...whatever you want! Just jump on in and don't be shy! And WELCOME!!! Come on over and visit mine, I LOVE new readers!

We did our first Walk for Wishes event yesterday and while some folks raised thousands of dollars, we managed to raise $835.00. I was quite happy!! I figure every little bit helps! For those who don't know, the average cost of a wish in our city is $6,000! There are MANY truly ill children waiting on their wishes in our area, so I am happy to do my part to give back. Lisa's wish trip was a magical time and I want other families to experience that.

[blessedmom4]

Originally Posted by KaylaM

She is g-tube fed, but over the years, she has gone through phases where she wants to "taste" eat a little bit here and there by mouth, which one was ice cream. That has always been the one thing she always ate the most of when in the mood. Last spring, we tried and she couldn't handle it due to a year ago, we found out that if her vocal cords get too wet (from saliva, liquids, crying, drainage) they cause her to do this weird breathing, which can be a problem at times and nothing helps to fix it until her vocal cords are dried up and back to normal. O2 doesn't even help, so. So last spring when we tried, it wasn't a good thing and I know she was disappointed. I can't go through that again. If I can get her to try something this week at home like yogurt, and I see she does fine and she is interested, then I might try. Otherwise, no. .. I would love to though! I would love to have us go and get some for her to enjoy like she has in the past.

However, she hasn't been able to go swimming since last spring (only once then) and so I can't wait to take her there. Even if its just the jucuzzi tub. She will love it!

Thanks!!!

I haven't seen any of the surf photos!

I hesitated to jump in here, but will on the off chance it might help. Lisa had a Mic-key PEG until February of this year. It took three hospital stays and two surgeries but it looks like it is FINALLY closed, just a few small issues with it at the present. Lisa had the PEG since she was three months old and turned 9 in March. She also has vocal cord issues, too numerous to get into...but she uses a bi-pap machine at night and it has made a HUGE difference in many aspects of her life. Just wanted to throw that out there because I would never have thought it could have had such an impact. Best of luck and no matter what it will be a wonderful time!

[KaylaM]

Originally Posted by kalimom6

Elsa was a g-tube kid too. I have a friend who's daughter has had many ups and downs and she is 6. Finally, after 2 years of NPO, she is able to eat again, but still gets nutrients via tube at night.

My daughter has had the tube for 15 years now (wow - hard to believe). At one point, she was eating 3/4 by mouth and the rest by tube until she was placed on a medication that decreased appetite. She was never an "easy" eater, so she lost the interest right away. She also went through a few years of a bad type of seizure that were triggered by anything put in her mouth (thank goodness they are gone). And especially due to illnesses, she just goes through phases where she wants something by mouth. Its always a special time as I enjoy those phases.

That is great your friends girl eats!! So many of these kids think "why should I work at eating when I can just be fed via tube".

[KaylaM]

Originally Posted by blessedmom4

I hesitated to jump in here, but will on the off chance it might help. Lisa had a Mic-key PEG until February of this year. It took three hospital stays and two surgeries but it looks like it is FINALLY closed, just a few small issues with it at the present. Lisa had the PEG since she was three months old and turned 9 in March. She also has vocal cord issues, too numerous to get into...but she uses a bi-pap machine at night and it has made a HUGE difference in many aspects of her life. Just wanted to throw that out there because I would never have thought it could have had such an impact. Best of luck and no matter what it will be a wonderful time!

Thank you so much for jumping in. ALWAYS do so if you have something to share.

My daughters' issues with vocal cords are easy to keep stable. Ever since we have known of the issue, we have been able to prevent them getting wet enough, and the couple of times they have, we just work through it. Luckily, when they get wet, it doesn't take long to recover if we do what is needed. She has no breathing issues except for when her cords get wet - her breathing sounds like its obstructed (snoring type noise), but clears once her vocal cords re-open. It looks like she is in distress breathing, but her respiration's are normal and her sats drop but in the normal range. She would not benefit from a Bi-Pap machine right now as she has good breathing. We do use a theravest which is the best thing we have had for 14 years. However, I will definitely keep that in mind and what you said..

[angel's momma]

Originally Posted by Momtokcc

We have been back from our trip for two weeks now and it was so amazing. So much more than I could have ever imagined!! I think Cade smiled more in those days we were there than I have ever seen him smile. It was definately magical for him.

Glad you had a wonderful trip! Love the part with him smiling so much. Sorry he hasn't been feeling well.

Originally Posted by Cassondra

I just signed us up to do the fish extender exchange. Any ideas for gifts? There are a lot of participants and we are on a budget. Any ideas would be appreciated! Counting adults there are already close to 60 people participating.

Have you seen this thread? Homemade FE Gifts Photo Thread

I haven't read all the way through it yet, but so far the things I've seen that we really liked (and are capable of doing ), have been more expensive than I estimated. Angel really wants to participate in it if we go, so I'm trying to figure out something budget friendly too.

[KaylaM]

Originally Posted by blessedmom4

CONGRATULATIONS to all those leaving in a few short days/weeks. It WILL be the experience of a lifetime




Welcome back, so happy Cade is doing as well as he can. AND that he had fun!





Go to this link, look on the left hand side (near the top) where you typically see post reply and click on start new thread.

Tell us about yourself, your family, your Wish child, pictures..why a wish, what organization...whatever you want! Just jump on in and don't be shy! And WELCOME!!! Come on over and visit mine, I LOVE new readers!

We did our first Walk for Wishes event yesterday and while some folks raised thousands of dollars, we managed to raise $835.00. I was quite happy!! I figure every little bit helps! For those who don't know, the average cost of a wish in our city is $6,000! There are MANY truly ill children waiting on their wishes in our area, so I am happy to do my part to give back. Lisa's wish trip was a magical time and I want other families to experience that.

Thank you so much. I will try to get to it this week, especially since we leave on Sunday.

How did you find out about the Walk for Wishes? I have always wanted to do one, but never hear of any. I would love to do many with my daughter. That is awesome on how much you guys raised!!