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

[jen-y]

We leave Monday morning The wish coordinators just dropped off our shirts and buttons and Alyssa and I got our mani-pedi's They scheduled a Sponge Bob meet and greet, but I gotta see if we can get the date changed due to scheduling.
Almost all packed. Just gotta make sure I have the most important stuff, which is Nicky's meds. Ordered pizza, cause I ain't trying to cook tonight (or tomorrow night) or I guess the next 10 nights after that

 

[rcq925]

We leave Monday morning The wish coordinators just dropped off our shirts and buttons and Alyssa and I got our mani-pedi's They scheduled a Sponge Bob meet and greet, but I gotta see if we can get the date changed due to scheduling.
Almost all packed. Just gotta make sure I have the most important stuff, which is Nicky's meds. Ordered pizza, cause I ain't trying to cook tonight (or tomorrow night) or I guess the next 10 nights after that

So exciting!!! I am sure tomorrow will go fast! Maybe try and take a nap tomorrow, since you won't be able to sleep from excitement tomorrow night!! Have a safe and wonderful trip!! Can't wait to hear all about your trip and see pictures when you get back!

 

[kayrason333]

We leave Monday morning The wish coordinators just dropped off our shirts and buttons and Alyssa and I got our mani-pedi's They scheduled a Sponge Bob meet and greet, but I gotta see if we can get the date changed due to scheduling.
Almost all packed. Just gotta make sure I have the most important stuff, which is Nicky's meds. Ordered pizza, cause I ain't trying to cook tonight (or tomorrow night) or I guess the next 10 nights after that

How exciting!! Have a great trip!

 

[kayrason333]

Our wish granters are throwing Jackson a going away party tonight! We will have about 25 family members there and it will be a pizza party! I will post some pics this week and I am also going to post our plans for when we are at Disney World!!!

Hope everyone is having a great weekend!

 

[xanphylus]

Our wish granters are throwing Jackson a going away party tonight! We will have about 25 family members there and it will be a pizza party! I will post some pics this week and I am also going to post our plans for when we are at Disney World!!!

Hope everyone is having a great weekend!

That sounds great!!! Have a blast and take lots pics!

 

[Mom2mitokids]

Our wish granters are throwing Jackson a going away party tonight! We will have about 25 family members there and it will be a pizza party! I will post some pics this week and I am also going to post our plans for when we are at Disney World!!!

Hope everyone is having a great weekend!

Can't wait to hear all the details.

 

[Mom2mitokids]

It's Mitochondrial Disease Awareness Week Sept 19th-25th. Did you know more kids die from Mito than cancer, but than yet nobody know about Mito? We need to find a cure. If you have a FB page...Can you please help me spread the word. I have too many friends with kids suffering from this horrible disease.

What is Mito...
http://www.youtube.com/watch?v=6_2oN1oTK-g&feature=player_embedded

Kylee has defects in complex III and IV. We aren't sure on Korissa yet.

Please watch this short video....

http://www.youtube.com/watch?v=t3C6848Dr2w&feature=player_embedded

 

[Mom2mitokids]

I have some great news on Korissa's PTR...page 15

 

[rcq925]

It's Mitochondrial Disease Awareness Week Sept 19th-25th. Did you know more kids die from Mito than cancer, but than yet nobody know about Mito? We need to find a cure. If you have a FB page...Can you please help me spread the word. I have too many friends with kids suffering from this horrible disease.

What is Mito...
http://www.youtube.com/watch?v=6_2oN1oTK-g&feature=player_embedded

Kylee has defects in complex III and IV. We aren't sure on Korissa yet.

Please watch this short video....

http://www.youtube.com/watch?v=t3C6848Dr2w&feature=player_embedded

Thanks for posting this. I admit that I don't know much about Mito. This helped explain it!

 

[alaskanabbott]

It's Mitochondrial Disease Awareness Week Sept 19th-25th. Did you know more kids die from Mito than cancer, but than yet nobody know about Mito? We need to find a cure. If you have a FB page...Can you please help me spread the word. I have too many friends with kids suffering from this horrible disease.

What is Mito...
http://www.youtube.com/watch?v=6_2oN1oTK-g&feature=player_embedded

Kylee has defects in complex III and IV. We aren't sure on Korissa yet.

Please watch this short video....

http://www.youtube.com/watch?v=t3C6848Dr2w&feature=player_embedded

Thanks for letting us know. As you know James is diagnosed with a Mito (MNGIE) but we chose not to do the muscle biopsy. His MRI showed the deterioration of white matter and he has all the other characteristics. That said, I am still such a newbie to Mito, and I really appreciate you taking time to help keep us informed

 

[Mom2mitokids]

Thanks for posting this. I admit that I don't know much about Mito. This helped explain it!

Thank you for taking the time to learn about Mito

 

[maroo]

I am convinced that Lauren's family has some Mito issues...both with Lauren (who they did a muscle bx on a long time ago, but not "live" and not at one of the good centers...and I bet they didn't test for that anyway)...but also with her little brother, who in some ways is struggling with health concerns even more than Lauren at this point.

Lauren contends she is the most normal person in their family - and some days I think she might be right...which is pretty bad since she can't stand, walk or sit up on her own.

Anyway...I appreciate the update on Mito and hope they have a great awareness week. They really need to step up the awareness - I would not know about it at all were it not for the families I met here on this thread.

 

[Mom2mitokids]

Thanks for letting us know. As you know James is diagnosed with a Mito (MNGIE) but we chose not to do the muscle biopsy. His MRI showed the deterioration of white matter and he has all the other characteristics. That said, I am still such a newbie to Mito, and I really appreciate you taking time to help keep us informed

Sorry to hear about James. I did read his PTR and TR. Kylee did have a muscle biopsy, Korissa has not. How did James get confirmed with MNGIE? Kylee fits it perfectly, but the blood test said no. She does have white matter on her MRI.

 

[rcq925]

Has anyone had the airline they were flying waive the baggage fees due to it being a Make A Wish Trip? I was just wondering, because this could be extra cash for souvenirs if they would waive the fees. We are flying Air Tran.

 

[maroo]

Has anyone had the airline they were flying waive the baggage fees due to it being a Make A Wish Trip? I was just wondering, because this could be extra cash for souvenirs if they would waive the fees. We are flying Air Tran.

I know that has happened in the past... I would just ask. Wear as much wish trip stuff as u can and that may help.

 

[J'sMum]

I have flown Air Tran in the past, Not for a wish trip but for other reasons I was in Mississippi to visit friends after Katrina and while down there my daughter come down very ill again ( I had only been in Mississippi for 2 days at this point) Air Tran was very nice and gave me a large Discount to get me home to her. So even though it may be a long shot, I would call someone from Air Tran ahead of time explain the trip etc and find out if there is a possibility of them waiving the checked baggage fee. Just let them know that you can provide documentation that it is indeed a Wish Trip and my bet is they will take it on for good PR.

 

[J'sMum]

Oh and I think I am back to be able to blog on here again on a reg basis ... I hope ! wowwie the season illnesses started in so fast this year and hit so hard but here we are ! James does have Remicade again on Wednesday. Yuck but at least he is having it before the trip so he will be full of energy and less on pain as far as arthritis goes ! LOL I missed this place !


And I have added an update to my blog with some Big Give pictures FINALLY lol, I can't wait to get caught up on all the PTR's and TR's

 

[mjarecki]

We are anticipating our MAW trip as it is still in the planning stages. If our MAW chapter will let us, we are going to stay an additional 2 days on our own. Can I use the tickets that we get from GKTW on those days? I was thinking of saving them if possible. Any advice?

 

[maroo]

I have flown Air Tran in the past, Not for a wish trip but for other reasons I was in Mississippi to visit friends after Katrina and while down there my daughter come down very ill again ( I had only been in Mississippi for 2 days at this point) Air Tran was very nice and gave me a large Discount to get me home to her. So even though it may be a long shot, I would call someone from Air Tran ahead of time explain the trip etc and find out if there is a possibility of them waiving the checked baggage fee. Just let them know that you can provide documentation that it is indeed a Wish Trip and my bet is they will take it on for good PR.

Wow! I didn't know that you have friends that live down here? Where are they from? I spent most of my time in Pass Christian right after the storm - it was crazy down here!

We are anticipating our MAW trip as it is still in the planning stages. If our MAW chapter will let us, we are going to stay an additional 2 days on our own. Can I use the tickets that we get from GKTW on those days? I was thinking of saving them if possible. Any advice?

to the DISboards and to the Wish Trippers thread!!!!

So glad you are joining us!

YES...

The tickets provided by GKTW are good for 14 days from the first use...

You can't "add on" to the ticket, though, by adding extra days - since the tickets are worth no cash value, they can't be added on...You would have to actually buy the days (and they are expensive because they are the "first" few days on the new ticket)... I hope that makes senase.

If you are able to add several extra days, then GKTW actually has some additional tickets to things like the Space Station, Gatorland, Aquatica (water park) and other venues.

 

[mjarecki]

Wow! I didn't know that you have friends that live down here? Where are they from? I spent most of my time in Pass Christian right after the storm - it was crazy down here!



to the DISboards and to the Wish Trippers thread!!!!

So glad you are joining us!

YES...

The tickets provided by GKTW are good for 14 days from the first use...

You can't "add on" to the ticket, though, by adding extra days - since the tickets are worth no cash value, they can't be added on...You would have to actually buy the days (and they are expensive because they are the "first" few days on the new ticket)... I hope that makes senase.

If you are able to add several extra days, then GKTW actually has some additional tickets to things like the Space Station, Gatorland, Aquatica (water park) and other venues.

Ok so what you're saying is that if we stay 2 extra days (and say we don't use tickets on one of the MAW days (we're planning on just doing stuff at GKTW one of the days). We could save the disney tickets and use them on one of our extra days? Just checking