Gloria Joy's premature (??) WDW MAW PTR

[Glo's wish]

Hi everyone! I have been "lurking" around reading everyone's pretrip reports and have been touched by so many of your stories! My daughter JUST found out 2 weeks ago that she will be granted a wish. We do not have any dates yet, but I do have an over abundance of questions!
First let me introduce my family. My name is Jeanie and I am blessed to have 4 wonderful kids- Sil (aka Silly) DS17, Max (DS11), Sam (DS9), and Gloria Joy -wish kid and DD6.
Gloria was born full term but with multiple (unexpected) birth defects -VACTERL ASSOCIATION-affecting her heart, lungs, kidney, bladder, spine, stomach, hips, hands, and bowels. Yep, pretty much everything!
I have already learned alot from the dozens of hours I've spent reading others PTR/TR's, but still have a lot of questions and am always looking for advice.
First off, have any single mom's done the MAW/WDW trip that might have suggestions for me??
Second, Glo is on 13 (liquid) meds, tube fed formula, and has many medical appliances(nebulizer, percussive vest, feeding pump, pulse ox) wheelchair, and diapers. I was told I should "carry on" her necessities so as not to chance losing them. Will they let me take that much as a carry on?? Obviously I do not fly much!!!
any and ALL suggestions are welcome!!!

 

[Glo's wish]

Sil (DS17)

Max (DS11)

Sam (DS9)

Gloria (DD6)

 

[maroo]

You did it!!

Just wanted you to know I found it and I will put a link on the Wish Trippers thread!

Woo Hoo!!

*now i gotta go back and read.

 

[billwendy]

Your kids are adorable!! Yay on your WISH!!!!! Cant wait to hear dates and stuff - it makes all even more real!!!!!!!!

 

[maroo]

Oh they are so cute!!!

Yes! I know some single moms that have done Disney!

Do you want to bring someone with you? Another family member or something? Because I do think it does help...the days are long at Disney (and I am sure they are already long enough at home). Usually MAW will spring for another adult to come if it is a single parent home.


As far as flying with all of that stuff.... I have no experience with it, so I will leave it to the experts! If you don't get an answer here on your pre-trippie - feel free to ask directly on the wish trippers thread or on the disABILITIES board, because there are a lot of awesome people on there that have flown with all sorts of equipment.

One thing I do know from reading on here is that you are allowed a medical bag (as long as it is all medical) and it doesn't count against your carry on limit - so you can fill it up and carry it on and it doesn't count.

Another thought...have MAW rent as much of the equipment as possible to be delivered to your villa (assuming you don't need it during the flight...probably not the pulse ox ) and then you won't have to take that stuff.

If her personal items are purchased at Walmart, then you can buy them when you get there and avoid dragging it all the way to Disney - there is a Walmart right down the street from Give Kids the World.

Are you staying at GKTW?

Gosh...looks like I am using all of the questions.

 

[Glo's wish]

THANK YOU MAROO!! I was feeling so lost. I am hoping to have my best friend come with but was told that when we have our first big meeting I'll have to ask. However they also said that they may not cover my oldest since he will be 18 by the time we go?? Something else to ask! He is already a big help with his siblings but I would like for him to be able to go and just have fun!
I wasn't aware that MAW may help with arranging equipment down there. I may be doing my PTR prematurely because we haven't had the meeting yet. I just tend to be a worrier and love having a plan in place! MAW was the one that told me about GKTW so I am assuming that is where we would stay!?

 

[Glo's wish]

Your kids are adorable!! Yay on your WISH!!!!! Cant wait to hear dates and stuff - it makes all even more real!!!!!!!!

Thank you! I am VERY blessed!

 

[xanphylus]

Your kiddos are cute! Can't wait to read more! Hope you get all your questions answered & sorry I can't help too much with them. Lots of the others will be here soon I am sure to help out with the answers!

 

[maroo]

THANK YOU MAROO!! I was feeling so lost. I am hoping to have my best friend come with but was told that when we have our first big meeting I'll have to ask. However they also said that they may not cover my oldest since he will be 18 by the time we go?? Something else to ask! He is already a big help with his siblings but I would like for him to be able to go and just have fun!
I wasn't aware that MAW may help with arranging equipment down there. I may be doing my PTR prematurely because we haven't had the meeting yet. I just tend to be a worrier and love having a plan in place! MAW was the one that told me about GKTW so I am assuming that is where we would stay!?

Nah! Not premature at all!!

We have had several folks start pre-trippies way in advance! We even had one family a while back that started one and I think her daughter ended up picking something else. Tee Hee!

It really is good for you to have some of your questions out there before your meetings so that you can maybe ask some of these questions.

I know that MAW sometimes does not pay for adult children...but maybe you can get them to cover him since he will barely be 18 and then hopefully your BFF come too. They could always come on their own time to help...we were planning on doing that if MAW could not swing having me tag along.

(I am not sure if you know my story or not, but I am "not the Momma" - just a nurse/friend of the family that I went with...) So...depending on your chapter, they may allow you to bring a friend to help with medical stuff - especially if you have a lot of medical stuff.

They did ask us for dates pretty soon after the first meeting...so you might be thinking on that...what time of year you guys want to go, etc.

 

[Glo's wish]

Nah! Not premature at all!!

We have had several folks start pre-trippies way in advance! We even had one family a while back that started one and I think her daughter ended up picking something else. Tee Hee!

It really is good for you to have some of your questions out there before your meetings so that you can maybe ask some of these questions.

I know that MAW sometimes does not pay for adult children...but maybe you can get them to cover him since he will barely be 18 and then hopefully your BFF come too. They could always come on their own time to help...we were planning on doing that if MAW could not swing having me tag along.

(I am not sure if you know my story or not, but I am "not the Momma" - just a nurse/friend of the family that I went with...) So...depending on your chapter, they may allow you to bring a friend to help with medical stuff - especially if you have a lot of medical stuff.

They did ask us for dates pretty soon after the first meeting...so you might be thinking on that...what time of year you guys want to go, etc.

Hi again! I haven't given dates a lot of thought-other than during cooler months-because I wasn't sure how fast things would move. I would LOVE to go the first week of Dec. but there is NO WAY we could handle waiting until Dec '11!!!! Otherwise Glo's birthday (March 1) would be nice if too many people aren't on spring break.
I am hoping they will cover both my son and BF as my son is still in high school, and my BF know as much about Glojo's care as I do...almost anyway!
There is so much that sounds fun to do- just VERY expensive! I'm hoping to find a dinner option that will be just as fun for the boys as for Glojo. More often than not they seem to be overlooked and Glo gets all of the attention. I understand that's a natural response, especially since she is in the hospital frequently and has had over 30 surgeries. Unfortunately the boys have struggled alot being shipped around from friend to friend while Glo and I are stuck half an hour away in the children's hospital. Now I'm rambling, I just feel bad for them. Sorry! Have a great night!!

 

[rcq925]

to the Wish Tripper Thread! Your kids are adorable!!!

From what I have read and heard, your oldest son should be covered no problem. He is still in high school and still living at home. I think they do not always cover adult siblings that don't live in the home, but you should be fine! Hope they cover you BFF as well, it would be nice to have the additional help!

I can't answer all your questions on the medical stuff, but some. My daughter and wish child, Hayley, has Cystic Fibrosis, so we travel with the vest, nebulizer, ect. When we flew in 2008, we just took the vest in its nice bag on wheels and it did not count towards our luggage. We did pack the nebulizer machine in the checked luggage. She had all her nebulized meds, but only one of them had to stay cold (Pulmozyme) so we packed that in a small cooler with ice packs and had no problems!

I am so glad your daughter is getting her wish and hopefully you could go this December, that would be fantastic!!

I am subscribbing to your PTR!

 

[wishin' on a star]

I just wanted to stop in and say hello and

We just went on our wish trip in May, and had a fabulous time. My wish child, Catherine just turned 7, and has many commonalities with VACTERL...complex heart defects, IA, single kidney, hydrocephalus, but no skeletal anomalies. Her specific heart defects have led the doctors to say it's not VACTERL, but we fit nicely in with the online support groups!

I can't wait to follow along!! Maybe I missed a post, but when do the wish granters come visit? Very exciting!! I am subscribing.

 

[J'sMum]

Hi ! and welcome Glad your here!
YOu have a beautiful family and just wanted to let you know i am subbing, I havent been on our wish trip yet but it's coming up quickly and this is the best place to learn answers

 

[Glo's wish]

to the Wish Tripper Thread! Your kids are adorable!!!

From what I have read and heard, your oldest son should be covered no problem. He is still in high school and still living at home. I think they do not always cover adult siblings that don't live in the home, but you should be fine! Hope they cover you BFF as well, it would be nice to have the additional help!

I can't answer all your questions on the medical stuff, but some. My daughter and wish child, Hayley, has Cystic Fibrosis, so we travel with the vest, nebulizer, ect. When we flew in 2008, we just took the vest in its nice bag on wheels and it did not count towards our luggage. We did pack the nebulizer machine in the checked luggage. She had all her nebulized meds, but only one of them had to stay cold (Pulmozyme) so we packed that in a small cooler with ice packs and had no problems!

I am so glad your daughter is getting her wish and hopefully you could go this December, that would be fantastic!!

I am subscribbing to your PTR!

I hope your right about MAW covering my son! That would be such a huge blessing as I'm not sure that it would be possible to go otherwise. I was hoping that since he was a fulltime high school student that he'd be covered. Thanks for helping answer some of my questions! One more for you..did your cooler with meds count as a carryon? My daughter is on Pulmozyme as well as 5 others that need to be kept cold. Thanks again!!

 

[Glo's wish]

Hi ! and welcome Glad your here!
YOu have a beautiful family and just wanted to let you know i am subbing, I havent been on our wish trip yet but it's coming up quickly and this is the best place to learn answers

Thanks for the awesome welcome!! I'm getting SOOO excited for this trip!!

 

[Glo's wish]

I just wanted to stop in and say hello and

We just went on our wish trip in May, and had a fabulous time. My wish child, Catherine just turned 7, and has many commonalities with VACTERL...complex heart defects, IA, single kidney, hydrocephalus, but no skeletal anomalies. Her specific heart defects have led the doctors to say it's not VACTERL, but we fit nicely in with the online support groups!

I can't wait to follow along!! Maybe I missed a post, but when do the wish granters come visit? Very exciting!! I am subscribing.

Hi Laura! Thanks for subbing!! Wow it does sound like our princesses have a lot in common!
I was told to expect a call any day now to set up our first meeting. I am really looking forward to this meeting so I can hopefully get some questions answered. The anticipation is killing us! We so need a vacation!

 

[billwendy]

I hope your right about MAW covering my son! That would be such a huge blessing as I'm not sure that it would be possible to go otherwise. I was hoping that since he was a fulltime high school student that he'd be covered. Thanks for helping answer some of my questions! One more for you..did your cooler with meds count as a carryon? My daughter is on Pulmozyme as well as 5 others that need to be kept cold. Thanks again!!

Jeanie -what if you told them that you really needed help and your son and friend were those helpers????? Tell them what you just said - It may not be possible for you to take them by yourself!!! Also, tell them that he is still a dependant that lives in your house and is still in HS! Hopefully they will allow you to have the help that you need to enjoy your trip!!!!!!

Cant wait to hear about your first meeting - it is sooooo exciting!!!

 

[Glo's wish]

Jeanie -what if you told them that you really needed help and your son and friend were those helpers????? Tell them what you just said - It may not be possible for you to take them by yourself!!! Also, tell them that he is still a dependant that lives in your house and is still in HS! Hopefully they will allow you to have the help that you need to enjoy your trip!!!!!!

Cant wait to hear about your first meeting - it is sooooo exciting!!!

Thanks, I will give that a shot!

 

[Glo's wish]

I just spent the last hour reading another PTR/TR and am once again touched by all of the generousity and encouragement every one shows! I am so glad to have found this site.
Although I still dont have any more info on Glojo's wish trip I am at alot more peace now. I am still VERY excited to get the planning phase started, just not worrying about every detail. I have read many PTR's where everyone is as concerned as I have been about how such a wonderful trip- a dream trip really- could be pulled off with out a hitch, yet it always seems to work out wonderfully. So no more worrying, I am just going to try to relax a bit and enjoy the ride because I think the planning has potential to be a lot of fun and go way too fast!
Thank you all for your encouragement and advice so far!!!

 

[LindaBabe]

Jeanie, your medicine cooler will also not be counted as a carry on - Your biggest issue will be running out of hands to deal with it all - but you have 3 stalwart sons, so that is covered, lol.