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

[dlewish]

Cant believe I just found this site!! My daughter is 3 years old and is currently undergoing treatment for Wilms Tumors. She is sooo excited for her trip. So are her brother and sister. We will be staying at GKTW.

I have a couple quick questions. Do I need to make dinner reservations in advance??? How about the Halloween Party at Disney??? Our wish kind of came through pretty quickly...not much time to over analyze or plan to much. I am preggo and cant travel anymore after November 12th and didn't want to go with a baby...so here we are.

Thanks in advance!

Congrats on your trip We just got back a not too long ago. You will love GKTW.

If you want to eat any character meals you will need to make reservations - ADRs. You can go to the Disney site and get a lot of info regarding all the character meal, table resturants, etc. All meals at GKTW are free. If you want to attend the Halloween party you will need to get tickets. It sounds like some MAW chapters include those tickets as something special and some do not. I guess you can check w/ your MAW office. (or your wish org. - not sure if you are going through MAW). HTH.

Have a great time!

 

[Happy Dreams1]

Pain's still there...hope it goes away as I'm sleeping. I got an MDA walk tomorrow!

 

[Mom2mitokids]

Pain's still there...hope it goes away as I'm sleeping. I got an MDA walk tomorrow!

I hope your pain goes away soon sweetie. That's awesome you are walking for the MDA. My girls Mitochondrial Diseases falls under MDA. Kylee went to her first MDA camp this year.

 

[Mom2mitokids]

Do you think it's worth asking the wish coordinator if Korissa can have a friend go with us? She really wants her friend to go and to also have an even number going.

 

[that's nice]

Cant believe I just found this site!! My daughter is 3 years old and is currently undergoing treatment for Wilms Tumors. She is sooo excited for her trip. So are her brother and sister. We will be staying at GKTW.

How great that your daughter has gotten a Wish!!!!

My daughter was diagnosed with a Wilms tumor at 1 yr old. She is going on her Wish trip this December.

I hope you have a great time!!!!!

I have a couple quick questions. Do I need to make dinner reservations in advance??? How about the Halloween Party at Disney??? Our wish kind of came through pretty quickly...not much time to over analyze or plan to much. I am preggo and cant travel anymore after November 12th and didn't want to go with a baby...so here we are.

Thanks in advance!

You can try the Disney website:

http://disneyworld.disney.go.com/reservations/dining/

or call 407-WDW-DINE

You can always try walking up to the particular restaurant and seeing if there is any availability. The worst they can say is no.

If you know what day you would like to do the Halloween party I would call your granting organization to see if they will order the tix for you. If not you can call 407-W-DISNEY. The party on Halloween is already sold out, so if you know what day you want to go I would order the tickets now. There is a will call so you can just pick up your tickets at Magic Kingdom.

 

[cajunfan]

Cant believe I just found this site!! My daughter is 3 years old and is currently undergoing treatment for Wilms Tumors. She is sooo excited for her trip. So are her brother and sister. We will be staying at GKTW.

I have a couple quick questions. Do I need to make dinner reservations in advance??? How about the Halloween Party at Disney??? Our wish kind of came through pretty quickly...not much time to over analyze or plan to much. I am preggo and cant travel anymore after November 12th and didn't want to go with a baby...so here we are.

Thanks in advance!

First, when are your dates?

Second, I like this website better than the Disney one...I find it easier to navigate...it also has all the menus to all the restaurants:

allearsnet.com

Since it sound like you are going in the next few days, be sure to get your tickets to MNSSHP ASAP! (How is that for a lot of acronyms!) I know the party on the 31st is already sold out. This week tends to sell out.

Lynn

 

[cdheders]

Thanks for all the replies. We are leaving on Thursday the 28th and coming back on the 3rd. I have made one adr for Akershus. My 3 year old really wants a princess dinner. I was unable to get adr for Cinderall's Royal Table. I'm hoping she will enjoy this. She is definately in the peak of her princess love.

 

[Happy Dreams1]

I hope your pain goes away soon sweetie. That's awesome you are walking for the MDA. My girls Mitochondrial Diseases falls under MDA. Kylee went to her first MDA camp this year.

It hasn't gone away, but it's slowly subsiding. I LOVE doing the MDA walks! In my school, there are gorups of 20 people and each person of the group has to raise $50. (I did it by selling playdoh lol) So, there were 3 groups representing my school today so that makes $3,000. We walked inside of our local mall! It was soo awesome especially when you have a school friend who has MD. We chanted his name all the way! "Luis, yo voy a ti!"-Don't know to properly translate that into English.
It's so cool that your daughter went to an MDA camp. Bet she had loads of fun!

 

[rcq925]

Hayley is home from the hospital!! Yeah!!!

The new medication helped her feel better fast and she came home today!!!

We got three Big Gives while she was in the hospital and I will post about those on my PTR!

Thanks for all the prayers and get well wishes!!!

 

[Happy Dreams1]

Hayley is home from the hospital!! Yeah!!!

The new medication helped her feel better fast and she came home today!!!

We got three Big Gives while she was in the hospital and I will post about those on my PTR!

Thanks for all the prayers and get well wishes!!!

YAY!!!!!!!! I told you that you can trust in God. Been praying for her! I'm so excited to read about the Big Give in you PTR!.

 

[blessedmom4]

We got a load of bad news about Lauren today.

Went to see her orthopedic surgeon that put in the rods in her back - the surgery that nearly killed her and one of the reasons she was granted a wish...

They fixed her back, but the curve has now moved to her neck.

She has a 50 degree curve in her neck. The xray looked simply terrible. She "compensates" by having a 10 degree curve in her lower pelvis area, but not enough. Her side has been leaning against her wheelchair and has pressed so hard against her side that the ribs have moved (her muscles have atrophied a lot) and now her lung is severely pressed against her side. You can see it above...it is more narrow on the left side of the xray (which is actually the right side of her body) than the left - which looks more normal. It looks like she has about 10% of one lung. The other lung is fine, but due to her size, her maximum lung capacity before this development was already only 50%.

The next step is to possibly get her a whole new wheelchair with new seating and new stuff to possibly keep her straight. The first attempt at this failed, but they are sending her to a new place to get it worked on.

The following step is surgery ... a big bad surgery where they will fuse her neck and fuse her back all the way to her pelvis. Hopefully that will keep her straight.

I had heard that they were not going to try this surgery because the risks are so high that she would lose all function below her neck. And I don't think they would even attempt it except that the rest of her health is good right now...It is almost like they decided it was worth doing so they could save her from pain for the years she has left this side of heaven.

But the whole thing was a huge blow to her Mom - she does radiology for a living, so she can spot a bad xray a mile away. Please pray for her whole family as they try to make some decisions and digest all of this.

Dear Maroo,

I am still having computer issues; however, I had to let you know that I am praying for Lauren and her sweet family and all that love her. I feel for Lauren's Mom, sometimes knowledge is a bitter pill (as an RN, I have faced that same reality).

I am saddened to hear so many of these darling children are having problems (my own included of course) and I just hope that better news is on the horizon for all.

To all who have asked for prayer, I am including you in mine. It truly IS much harder when it is one of your babies (regardless of age) versus yourself.



Blessings,
Judy

 

[blessedmom4]

Hayley is home from the hospital!! Yeah!!!

The new medication helped her feel better fast and she came home today!!!

We got three Big Gives while she was in the hospital and I will post about those on my PTR!

Thanks for all the prayers and get well wishes!!!

I am so thrilled she is HOME!!!! Praise God for excellent news! Can't wait to read more on the PTR!!!!

 

[hotmamac]

Maroo ~
I'm so sorry to hear about Lauren. I was reading your post without really realizing who it was posting and when I did realize, I was double-y shocked/saddened. When my daughter Ali was going on her wish trip, you sent us some beautiful bracelets to wear. We still wear them.
I'm praying for Lauren and her family and wish you all the best.
Misty

 

[blessedmom4]

It hasn't gone away, but it's slowly subsiding.

I hope you are feeling MUCH better today!!! I know you are very excited and looking forward to hearing from MAW about your status. I hope the news comes quickly and it is happy news for you!

 

[Happy Dreams1]

I hope you are feeling MUCH better today!!! I know you are very excited and looking forward to hearing from MAW about your status. I hope the news comes quickly and it is happy news for you!

Thanks! I am feeling much better. Oh yes..super anxious.

 

[maroo]

I am so sorry...been MIA!

My job at work has changed drastically over the past week...in a good way, in that I get to keep it! But in a bad way - no time to DIS! Of course...I will take the former and we will just have to deal with no time to DIS!

I couldn't say for sure, but every week at GKTW Thursday is Christmas, and they do a traditional dinner at the Gingerbread House then. I would be totally shocked if they didn't do the same for Thanksgiving.

NOTE! And this is really important for planning...so I bolded it...

Christmas MAY be on Tuesday (or another day of the week) during holiday weeks like Thanksgiving. You will need to call GKTW closer to the date to make sure...but I am almost positive it was Tuesday last year. I guess they don't want the volunteers to all have to miss their Thanksgiving dinner and it takes a lot of volunteers to do the Christmas party.I would assume they would have yummy food all week, though!

We are leaving for our trip in 23 days. I haven't heard anything from our MAW wish granters. For those of you who have already done your trips-when did you start to hear from them? I'm very much a planner and I am just trying to start thinking everything we've got going on the week before we leave and when we could do Michael's send off party. Thanks

This varies greatly by chapter...I have seen some families say that they had a big party and it was planned over a month in advance as they were supposed to invite guests...

and I have seen some chapters do a surprise sort of party and invite their own guests...

and I have seen very small get togethers with cake and such just right before the trip.

For ours...we found out the day before? I think?? And Lauren had a lot of studying to do (9 weeks tests)...so she studied while we went over the documents and such.

This week, one of my friends told me that he feels "obligated" to go to DisneyWorld this weekend. I was like: and I just wish that everyone would have a child's heart. I don't feel so well today..just an hour ago, I have this sharp pain in a specific spot in my abdomen that is aggravated when i inhale deeply. Feels weird....I'll just sleep it off tonight.

Hope it got better!!!!!

Cant believe I just found this site!! My daughter is 3 years old and is currently undergoing treatment for Wilms Tumors. She is sooo excited for her trip. So are her brother and sister. We will be staying at GKTW.

I have a couple quick questions. Do I need to make dinner reservations in advance??? How about the Halloween Party at Disney??? Our wish kind of came through pretty quickly...not much time to over analyze or plan to much. I am preggo and cant travel anymore after November 12th and didn't want to go with a baby...so here we are.

Thanks in advance!

to the DISboards and the Wish Trippers thread!!

I think you got your answer...but I just wanted to say welcome!

Thanks for all the replies. We are leaving on Thursday the 28th and coming back on the 3rd. I have made one adr for Akershus. My 3 year old really wants a princess dinner. I was unable to get adr for Cinderall's Royal Table. I'm hoping she will enjoy this. She is definately in the peak of her princess love.

You will LOVE Akershus!! I have heard great things about it and have heard lots of families say that they really like it better than the castle...

However, you may be able to get a ressie at the Castle closer to your trip - even while you are there...just let them know you are a wish family and show them your button!

Hayley is home from the hospital!! Yeah!!!

The new medication helped her feel better fast and she came home today!!!

We got three Big Gives while she was in the hospital and I will post about those on my PTR!

Thanks for all the prayers and get well wishes!!!

I am so glad she is ok!!!!!

Dear Maroo,

I am still having computer issues; however, I had to let you know that I am praying for Lauren and her sweet family and all that love her. I feel for Lauren's Mom, sometimes knowledge is a bitter pill (as an RN, I have faced that same reality).

I am saddened to hear so many of these darling children are having problems (my own included of course) and I just hope that better news is on the horizon for all.

To all who have asked for prayer, I am including you in mine. It truly IS much harder when it is one of your babies (regardless of age) versus yourself.



Blessings,
Judy

Thank you! It has been pretty crappy for them all! I think Lauren gets tired so much more easily.

They are doing her seating evaluation on the 16th of November, so hopefully we will know more then...maybe they could do the surgery over Christmas?

Maroo ~
I'm so sorry to hear about Lauren. I was reading your post without really realizing who it was posting and when I did realize, I was double-y shocked/saddened. When my daughter Ali was going on her wish trip, you sent us some beautiful bracelets to wear. We still wear them.
I'm praying for Lauren and her family and wish you all the best.
Misty

Hi Misty!!!!

I miss making those bracelets! I gotta start doing that again!

I hope Ali is doing well!

Thanks for praying for Lauren. We are all pretty sad about it around here. Until she can get some of that lung function back - she is really struggling!

But we will all make it!!!

 

[Happy Dreams1]

In addition to alot of wish kids being sick, I would like to throw out there that my friend, the 10 year old girl who is also getting a wish, went with her mother to the E.R. last night. I don't know alot, but I know that they sent her back home with meds but is still pretty sick. I've messaged her mom, just gotta wait 'till she replies. This girl hasa type of scleroderma(it's systemic) and I contacted her mom by a post she left on the make-a-wish page on facebook. I explained to her basic stuff about make-a-wish and she asked her daughter's doctor after she got help from me. Because she is a very busy single mother and has not had time to contact MAW for the refferal papers, I sent her the paper via email and I hope she has already filled them out and sent them to MAW. Turns out she also lives in Puerto Rico and less than 1/2 an hour away from me! I live in Guaynabo City and she's in Bayamon(you can look at a P.R. map and see how close they are). The girl has told me that wants to go to DisneyWorld( I had no influence in this).

 

[Happy Dreams1]

Me and Luis

Second one from right to left.

Find me!

The shirts say: "Pasos", which means: "Steps."
Find me again! LOL Im to the right side.

 

[rcq925]

Another mom on here reminded me about ice packs. Hayley has one med that needs to be kept cold.

What type of ice packs are acceptable to go through airport security and use on the airplane?

Any help would be greatly appreciated!

 

[Cheshire Figment]

I guess the answer to this is "how cold is cold"? The Frio Cold Packs will keep items in them about 30 degrees lower than ambiant temperature.

I would suggest going to www.coolerconcept.com and looking at the Frio Cold Packs. There are several people in this forum, myself included, who use them.

These are gel packs that are water activated. They will keep the internal temperature at insulin-safe levels for over 40 hours in a 100 degree envrionment. As the water evaporates you can just soak it in water for a few minutes to reactivate it. They come in various sizes.

For example, I have a "double wallet". Depending on what I am doing it will hold my Byetta pen as well as either a syringe with insulin in it or two insulin vials. And I tend to do at least five air round trips a year and have never had any problems with TSA over it.