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

[cdheders]

My daughter is hypoglycemic and is on an injectable med. that needs to be refridgerated. We usually use a cooler with ice packs...and monitor temp. Will this be ok on the plane???????

 

[mjarecki]

Thank you so much to the Davis Family! Michael received a gift card to Disney World today in the mail! He was so excited-he really likes gift cards-they have been the gift of choice lately for his birthday and Christmas! I really appreciate it! Congratulations to Nancy (weluvdizne) on the new baby that is coming! Babies are so much fun! Michael really appreciates the Pixie Dust and already knows where he wants to spend it-at the toy store at Downtown Disney! Thanks

 

[kailatilear]

Her wish is disney and swim with the dolphins the lady put the two together as one wish. They asked if we had luggage and a camera and abby all her favorite things. As they were leaving and said if we come back we will have a big party. She is so excited. as a mom, I am worried... about the "if", Steve said it's because of legal issues they have to say. How long does it usually take to hear anything? Any information about this whole thing would be so helpful. I am so glad I found this board as I am new.

 

[visitingapril09]

My daughter is hypoglycemic and is on an injectable med. that needs to be refridgerated. We usually use a cooler with ice packs...and monitor temp. Will this be ok on the plane???????

If it is something like glucagon, no problem, with a prescription label on it and letter from the drs office saying she requires having it with her person at all times.

 

[Happy Dreams1]

Kailatilear, I don't have the answer to any of your questions..but I would just like to say: to the DIS!!!!! You'll love it in this thread..I've only been here for short time, but they're my friends now and these families have alot of insight!! You can read on many tips about trips to disneyworld ont he first page of this forum.

 

[billwendy]

Her wish is disney and swim with the dolphins the lady put the two together as one wish. They asked if we had luggage and a camera and abby all her favorite things. As they were leaving and said if we come back we will have a big party. She is so excited. as a mom, I am worried... about the "if", Steve said it's because of legal issues they have to say. How long does it usually take to hear anything? Any information about this whole thing would be so helpful. I am so glad I found this board as I am new.

That sounds alot like Madison's Wish too - they are leaving on their trip tomorrow!!! I hope you are soon planning your trip!!!! Welcome!!

 

[Mom2mitokids]

Her wish is disney and swim with the dolphins the lady put the two together as one wish. They asked if we had luggage and a camera and abby all her favorite things. As they were leaving and said if we come back we will have a big party. She is so excited. as a mom, I am worried... about the "if", Steve said it's because of legal issues they have to say. How long does it usually take to hear anything? Any information about this whole thing would be so helpful. I am so glad I found this board as I am new.

Are you going through MAW? If you are..Swimming with the dolphins is a separate wish. They have Swimming with the dolphins as 1 wish and Disney World is another. We were told by MAW that all chapters are the same when it comes to this wish. Trust me...this is what my daughter wanted so badly. My daughter chosed(sp) Disney World. Other Wish Foundation have combined the 2 wishes. From what I understand...if they come to your house..they will get their wish. I will be hoping and praying that everything works out.

 

[mjarecki]

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!

I read about the cool packets some described, but I don't think they will keep Michael's pulmozyme cold enough. We are flying Southwest so I went to their website and say the following remark from a customer:

In Response to Need advice on carrying on medication :
I take Enbrel, which is also a pen-injection type medication, and also has to be kept cold. I recently traveled with it from LAX to RNO. I bought a small insulated lunchbag, put in two freezer packs, and then wrapped my medicine in bubble wrap (so that it wouldn't touch the freezer packs and freeze). I kept it out and separate from my other carry-on luggage as I went through security. I told the TSA guy that I had an syringe/pen in the bag and he told me I was fine, and that I should always put it separately from everything else. They then ran some sort of swab test on the freezer packs, and then sent me on my way. It was MUCH easier than I thought. (Oh, and I kept the Enbrel pen in its original box so that my prescription label was there, just in case.) Good luck!

 

[cantwaittoseemickey]

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.

Here is a picture of the top of the xray. Obviously Lauren doesn't want people seeing the whole thing.

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.

My hopes thoughts and especially prayers go out to Lauren, Hayley, thier friends and family. *hugssss hugsss hugssss


I tried to do an update on TR tonight but some reason it keeps telling me to log in and refuses to let me do so :/ I will just try again tomorrow.

My son's school has been a pain in the rear these past couple of weeks. It;s almost as though they are punishing him for having a wish trip and have stressed him out to the point I had to go pick him up from school today and bring him home. After losingmy cool with the super's office and being extremely firm with the 504 coordinater i only wanted to scream more. they said they have no paperwork on his illnesses or my daughters illnesses. UGH GRR they have given my son 6 detentions which he did not stay for due to me telling him to make sure he comes straight home. He has to eat directly after school or he will feel ill. and detentions are 3 hours long. he recieved the detentions for not making his gym classes up from being 1. out sick with flu(1 week) 2. being out for his remicade treatments ( that was 1/2 week) then his Dream Trip which was a week. so they literally are punishing him. since he did not stay. they are suspending him. and Gym class is suppose to be a secondary. ... Anywho there are much worse things then this I know. Just fustrating and well i decided to vent for a moment LOL TY anyhow crazy how schools can be. They are taking the word remission and running with it forgetting that he has alt issues beyond crohn's and stress will reactivate a new flairup in crohn;s So I am seriously considering homeschool for this year. but we will see what happens. One plus. We are going to try and go back to disney next fall !!!! atm it's just a possibility. I am learning now that where there is a will there is a way. I read somewhere on the disboard that someone saved to go to disney by useing coupons and rounding $ amounts up on bills and taking the coupon value and change from rounding bills up and saving. That is my new goal. I will also try to sell a few more poems and take 1000. out of income tax. soooo crossing fingers , we will go back. and no will not be as magical as it was while staying at gktw, but having the ability to go spend a day there will be amazing ! wonder if alumni kiddos can have icecream while there??? Hard part will be flying. I am so SCARED of flying. Like anything I am scared of though, I wont let my fear stop me. Never have, Never will so heres Hoping for a possible new trip.

Maroo I am sorry to hear the news about Lauren. My family is praying for her. I hope her new seating will help

A little back ground...When the wish granter came for Kylees wish they told the kids that a limo would be picking us up and take us to the airport. The kids were on cloud nine. When we got our itinerary they got us a shuttle would be picking us up and not a limo(more on this in a sec as we ended up not using it). Korissa has been praying that a limo will be picking us up this time. Should I call and ask if we can get a limo? Out of all the PTR and TR I have read(minus one) everyone gets a limo. Is it because we have a large family? Would we all fit in one with all our stuff?

On too the shuttle.. The day before we were to leave on Kylees trip we had wild fires all around us. All the freeways we needed to take to get to the airport were closed. Talk about stress. The shuttle was suppose to come pick us up at 5am on Sunday morning. as the day wore on the fires were getting bad. I called up the MAW chapter and talked with them. We didn't want to chance that the freeways will still be closed in the morning. Try to make a long story short...they said they will cancel the shuttle service and we can use that money for a hotel so we can be down there for the early morning takeoff. Since it was a short notice and no one was in the office they said to use our money and that they will pay us back when we return. This was $200(the cost for the hotel..what they would spend on the shuttle) we had to fork out and not to mention keeping my SUV at LAX for 8 days. When we got back we called them and they said they would send a check. We never got it. We didn't want to call them again because for all they did. Would you say something now? We really had to pinch on the trip because that was $300 out of our fund. BTW... Some how we made it to our hotel(right next to LAX) with no problems. It was that little pixie dust. Literally..the freeway opened up for 15 min and they closed it again 5 min after we passed. Flames and smoke all arond us. Kind of scary.

I would think you would all fit in there. We stuffed some of our luggage (Ty's wheelchair too) up front with us and some in the trunk. I would definately ask them because it seems very important to her.Ty was just as excited about the limo as he was the trip. Maybe you could ask them if they are providing transportation to the airport and if so how is that handled as she would really like a limo?

Hey everyone!! I feel like I haven't been here in a million years!! You all have been busy.
I wanted to give you an update on us.
I'll start with the good news. Neal comes home in a little over a month. (only for 2 weeks but better than nothing) I have planned a trip for just us. We have not been on a trip since we were married in 2000. We are goin to Vegas for a week. I went once years ago for a conference but he has never been. I thought it would be fun to go just the two of us and someplace with lots to look at. Our wish trip and the age of the big kids has given me the guts to leave Haylee at home with the older kids.
NOW THE BAD NEWS!!!
Haylee gave me a huge scare yesterday. She was in for a regular peds appt. She was just acting really wierd!! Getting flush, jittery, a little jerky and like she was "out of it" so after 45 min we got into she her and by now i was really geting concerned!! The dr starting watching her eyes and they were acting up now too. She made a STAT page to Neuro and Haylee's Dr called IMMEDIATELY! He said she was in a seizure!! Needless to say between her terrible veins and 4 nurses after another 45 min we had and IV in and meds onboard. And the seizure finally stopped. I was so scared. 1 1/2 hour seizure. So she was sompletely out of it until about 945 last night (the seizure started at 930am) I tucked her into bed with me and she smiled and fell to sleep.
I am now watching her out of the corner of my eye nervous!! They said this could be a "new thing starting" for her. GREAT!!!!

Thanks for always being there for us!!

That is so great to hear Neal is coming home Hope you have a wonderful trip to Vegas!! I'm sorry to hear about Halee's siezure. I hope it is a one time thing.

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!!!

Sorry I am late with this but I am so glad to hear she is home. We will say a pray she continues to do well

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!

I just packed the reusable icepacks we get in Ty's meds and put them in a cooler bag. His med needs to stay frozen and it worked out well. We didn't have anyp problems. As a matter of fact the cooler bag had holes all in it as it had ripped from the wear and tear at the parks and they still didn't say anything to me.

My daughter is hypoglycemic and is on an injectable med. that needs to be refridgerated. We usually use a cooler with ice packs...and monitor temp. Will this be ok on the plane???????

That worked fine for us. We had no problems at all.

 

[Mom2mitokids]

Wishing my baby girl a Very Happy Birthday. I hope all your Wishes comes true.

 

[maroo]

Her wish is disney and swim with the dolphins the lady put the two together as one wish. They asked if we had luggage and a camera and abby all her favorite things. As they were leaving and said if we come back we will have a big party. She is so excited. as a mom, I am worried... about the "if", Steve said it's because of legal issues they have to say. How long does it usually take to hear anything? Any information about this whole thing would be so helpful. I am so glad I found this board as I am new.

to the Wish Trippers thread and to the DIS!

So glad you are here!

I am a little confused...are you worried that your child may not be granted a wish at all or that the two things would not be combined in one?

I am not sure of the 2 being combined, as that really depends on the organization granting the wish, but I would think if they have come to your house that your DD should be getting a wish!

 

[rcq925]

We are getting so close!! Only 17 days until start our trip! I have still not received a packet or anything from Give Kids The World. I remember others saying they got a packet.

Should I call them?

I am also wondering it there are things that anyone who has been there recently would advise that I definitely bring?

I am just sure I will forget something!!!

I have not even started packing yet, but have lots of lists. I would like to pack, but I have no where to store the suitcases for 2 weeks once packed!

Does anyone know if they have a clothes iron and ironing board in the villas? I am thinking that I will need to iron all of Hayley's beautiful Big Give dresses once we arrive.

Any tips or suggestions are appreicated!! We are getting so excited!! I hope the next two and half weeks fly by!

 

[that's nice]

We are getting so close!! Only 17 days until start our trip! I have still not received a packet or anything from Give Kids The World. I remember others saying they got a packet.

Should I call them?

I am also wondering it there are things that anyone who has been there recently would advise that I definitely bring?

I am just sure I will forget something!!!

I have not even started packing yet, but have lots of lists. I would like to pack, but I have no where to store the suitcases for 2 weeks once packed!

Does anyone know if they have a clothes iron and ironing board in the villas? I am thinking that I will need to iron all of Hayley's beautiful Big Give dresses once we arrive.

Any tips or suggestions are appreicated!! We are getting so excited!! I hope the next two and half weeks fly by!

I can't help you with the packet from GKTW...


On the GKTW site they say that there are ironing boards and irons.

http://www.gktw.org/pre/faq/faq.asp?p=faq

What are the accommodations like at the Village?
If you are staying with us at the Village, you will be in one of our whimsical villas, you will have a fully accessible, two bedroom, two bathroom villa. Complete with all of the comforts of home including:
• Washer and Dryer with complimentary laundry detergent
• Hair Dryer
• Iron and Ironing Board
• Coffee Maker
• Refrigerator
• Microwave Oven
• Stove Top
• Blender
• TV and DVD player
• Roll-away bed
Your villa will be been stocked with a Welcome Bag on the kitchen table, along with sodas, milk and water in
the refrigerator. Each villa contains a washer and dryer and detergent and dryer sheets. There is also a hair dryer for your convenience. In the bedroom closets you will find extra blankets, pillows, a travel crib and a roll-away bed.



Hope this helps!!!

 

[kailatilear]

I am worried about her not getting her wish. The statement "if we come back we will have a party", concerned me. The WDW and swimming with the dolphins, she really wants Disney and expressed that as her main wish, so that doesn't concern me. Also, I am wondering when we will know something, how long it usually takes, that sort of thing. I am also wondering about the trip reports, when do you start it? When you first get interviewd for the wish or when you find out the wish is granted? If someone could please help me out that would be great.

 

[that's nice]

I am worried about her not getting her wish. The statement "if we come back we will have a party", concerned me. The WDW and swimming with the dolphins, she really wants Disney and expressed that as her main wish, so that doesn't concern me. Also, I am wondering when we will know something, how long it usually takes, that sort of thing. I am also wondering about the trip reports, when do you start it? When you first get interviewd for the wish or when you find out the wish is granted? If someone could please help me out that would be great.

From the time our DDs paperwork was started till we found out she was approved was about 2-3 months. I'm thinking if the wish granters already came to your house that her wish is already in the works.


I think you can start a PTR whenever you like. My daughter was granted a wish but we didn't know when dates she was approved for. I started our PTR in the meantime. You can also post questions here on this thread till you find out if/when the wish will be then start your report.

 

[dlewish]

We are getting so close!! Only 17 days until start our trip! I have still not received a packet or anything from Give Kids The World. I remember others saying they got a packet.

Should I call them?

I am also wondering it there are things that anyone who has been there recently would advise that I definitely bring?

I am just sure I will forget something!!!

I have not even started packing yet, but have lots of lists. I would like to pack, but I have no where to store the suitcases for 2 weeks once packed!

Does anyone know if they have a clothes iron and ironing board in the villas? I am thinking that I will need to iron all of Hayley's beautiful Big Give dresses once we arrive.

Any tips or suggestions are appreicated!! We are getting so excited!! I hope the next two and half weeks fly by!

The packet from GKTW is just a pamphlet and directions from the airport. All the stuff in the pamplet can be found on the webiste, so if you've been to the website it will be nothing new. You could call to confirm if that makes you feel better.

Yes, they have an iron and ironing board. I know this was suggested many times... bring an extra suitcase or large bag (if you can). If flying SW you get two bags to check. We ended shipping all of our gifts, etc. home via fed-ex. It wasn't too expensive, so you may want to considered that. There is a fed-ex at the corner of bass rd opposite of Walmart. If your suitcases are pretty full, you won't have room for all the other goodies, plus stuff you may purchase at the park.

On the website it mentions they stock the villa w/ some goodies, soda, milk, etc. Just fyi... we did not have milk (no problem as we were going to walmart anyway) so if that is something you need immediately you many want to get it on the drive to the villa.

Enjoy your trip

 

[Happy Dreams1]

Wishing my baby girl a Very Happy Birthday. I hope all your Wishes comes true.

aaawww HAPPY BIRTHDAY!!!!!!!!!!11

 

[Happy Dreams1]

My dad called my Dr. and his wife said that he alreadyfaxed the papers to MAW almost a week ago.

 

[kellyw8863]

We are getting so close!! Only 17 days until start our trip! I have still not received a packet or anything from Give Kids The World. I remember others saying they got a packet.

Should I call them?

I am also wondering it there are things that anyone who has been there recently would advise that I definitely bring?

It's getting close! We stopped at WalMart and bought cheap floaties for the pool. I think they were only a couple of dollars a piece? I don't know if it's changed, but when we were there, there were no pool toys, so we were glad that we had them.

 

[Happy Dreams1]

We are getting so close!! Only 17 days until start our trip! I have still not received a packet or anything from Give Kids The World. I remember others saying they got a packet.

Should I call them?

I am also wondering it there are things that anyone who has been there recently would advise that I definitely bring?

I am just sure I will forget something!!!

I have not even started packing yet, but have lots of lists. I would like to pack, but I have no where to store the suitcases for 2 weeks once packed!

Does anyone know if they have a clothes iron and ironing board in the villas? I am thinking that I will need to iron all of Hayley's beautiful Big Give dresses once we arrive.

Any tips or suggestions are appreicated!! We are getting so excited!! I hope the next two and half weeks fly by!

Time sure flies by!!!!