Tommy's Make-A-Wish preTrip report

[waiting4ourtrip]

We have our dates! Dec 21-27. We have never been to any of the Disney parks before and we are super excited.

Tommy has a very complicated heart and brittle bone disease. He joined our family a year ago at the age of 2 1/2. We have 5 children ranging in age from 17 to Tommy at 3 years old.

Tommy's orginal wish trip was scheduled for July this year. Unfortunately Tommy's heart started failing rapidly and his trip had to be postponed. He ended up having open heart surgery instead. Now the trip is scheduled for Dec. They said we will be staying at Give Kids The World.

Tommy loves loves loves the Cars movie and that is why Disney World was picked. He had the Cars dvd on a loop at the hospital. It is going to be very cute seeing him at Disney World.

We are looking forward to learning lots from these Disney boards!
Thanks,
Tommy's mom

 

[Momto15]

Hi Tommys Mom!
We are waiting for our dates & might be going in December too. I cant wait to read more about your family and Tommy is adorable!
Blessings!
Sarah

 

[waiting4ourtrip]

Thanks, we are very excited.

 

[waiting4ourtrip]

Tommy has been going to the doctors a lot lately. Oh well. We received more details from our wish granter. We will have Tommy's wish party Dec 10. We will go over to stay by the airport the night before we leave. We are trying to figure out how we are going to fit in everything in 5 days. Any advice?

Thanks,
Grace

 

[waiting4ourtrip]

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[mom2maggie]

this was the first time I saw you PTR and would love to hear about him.

 

[waiting4ourtrip]

We adopted Tommy from China in Sept 2010. We knew his special need was heart problems. He has a very complex heart. About in March we found out he has brittle bone disease also. By May this year his heart was giving out. Our childrens hosp said he was too fragile to do surgery on. Well, they actually said that in Feb and in May. Our cardiologist got opinions from around the country to see what could be done for Tommy. The end of June we flew to Boston Childrens Hosp for Tommy's open heart surgery.

He has been like a new child since then. He has energy, a personality and curiosity. Unfortunately, we just found out his heart function is declining.

We are very much looking forward to going to WDW. Our little ten year old daughter has a paper chain hanging up in her room counting the days until our trip.

 

[p00h4me]

Just saw your PTR and read about Tommy and so glad that his MAW will happen during Christmas time! You might want to read Juliana's wish trip when they went in December last year.

http://www.disboards.com/showthread.php?t=2612368

To read other wish reports or to post a question to other wish families:

http://www.disboards.com/showthread.php?t=2807833

GKTW has Christmas every Thursday evening. So plan to go to Sea World during the day so you can get back to GKTW for dinner and then go meet and take a family picture with Santa (get there early to avoid long lines) and each child will be able to pick out a toy of their choice. I read that recently they started doing a Halloween party on Monday evenings. Each villa is decorated for Christmas with a tree.

I've been to Disney World during the Christmas season three times. It's my favorite time to go. I would not go to the Magic Kingdom on Christmas Day because the park is usually packed. It will not be possible to do everything in the parks. Others have suggested to pick must do rides and attractions at each park. Then everything else will be extra. You only get 3 Disney World day park tickets. Many have split Animal Kingdom (go in the morning) and Disney Studios (go in the afternoon to evening and check out the Osbourne Lights and it's also where Tommy can see Lightning McQueen and Mater) for one day and spend a day each at the Magic Kingdom and Epcot (each has a wish lounge to take a nap or rest). You can also do Universal Studios and IOA on another day. See what Tommy would be interested in doing and then just go with the flow!

Here's a link to the GKTW Village Guide. It's dated April 2011 so there could be a few changes since then but it'll give you an idea of what to expect.

http://www.gktw.org/pre/pdf/village-guide.pdf

Tommy is such a handsome guy and he's blessed that you wanted to adopt him. I'll be praying for him and that the doctors can find out the reason for why his heart function is declining.

Hope this isn't too much information overload! Keep posting and tell us a little more about your family. We'll love to hear about your plans and about your trip when you come back! Your trip will be here before you know it! Have a wonderful trip!

 

[waiting4ourtrip]

Thanks for the info.

We have five kids, ranging in age from almost 18 down to Tommy at three years old. We are trying to figure out what to do. Our older kids want water parks. Tommy loves Cars and Mickey Mouse. Our younger daughter wants to play the Candy Land game and go to the Spa at GKTW.

Even though Tommy has energy now since his surgery, he still takes about a three hour nap everyday. We are currently in the process of getting a special needs stroller/wheelchair for Tommy that will acomodate his oxygen tanks and also let him lie down and sleep if he wants to. We should have that in a week or two.

big sister pushing Tommy in the hospital.

I need to work on resizing the pictures I post. It says they are resized, but then they always come up big.

Thanks again!!

 

[p00h4me]

Can you extend your trip and stay off-site somewhere? GKTW has free tickets to a couple of water parks, Aquatica and Wet 'n wild, that you can ask Guest services for but they only give 4 tickets per family from what I remember someone mentioned. So many choices and lots of decisions to be made! You have about a month to go before your trip now!

 

[waiting4ourtrip]

arrg. I am still getting used to these boards.

 

[waiting4ourtrip]

Our MAW chapter does not allow trip extensions. The trips are for six nights and no more no matter what. We asked a couple of times to extend the trip at our cost and were refused. It's okay, it is a priviledge to be getting a trip.

Our oldest boy and girl are going to college thru the Running Start program. My husband is a teacher, I am a bookkeeper. Our next two youngest go to public school. Tommy is in a developmental preschool one day a week for two hours. That is all he has energy for and they require that I am there with him, due to his special needs.

Tommy is on oxygen full time. Can he go on any rides at WDW with his oxygen tank? I saw a lot about stroller/wheelchair rentals thru WDW on the GKTW page. Are we allowed to take his own into WDW with us?

Thanks, Grace

 

[p00h4me]

Too bad that your MAW chapter won't allow you to extend your trip.

That's great that your two oldest are taking college courses while still in high school. Our oldest granddaughter is doing that also. She graduates in June and will have almost completed two years of college courses. The high school pays for those college courses so her parents will just have to finance her last two years.

On the disABILITIES forum, you can read about wheelchairs:

http://www.disboards.com/showthread.php?t=595713

If that doesn't answer your question, then post a thread about bringing your own wheelchair on that forum. You'll also have to check it in at the airport terminal when you board the plane.

I did remember someone asking about oxygen tanks and went back to find the post. See post 3272 and there's about 3 answers to the questions as you scroll down the page.

http://www.disboards.com/showthread.php?t=2626769&page=219

You can also ask Owensheart's mom what she found out about bringing the oxygen on the plane and to the different parks for her little boy. They will be going on their MAW trip before you. Here's their PTR:

http://www.disboards.com/showthread.php?t=2677570

Is your MAW chapter helping you to order the oxygen tanks to be delivered to GKTW or do you have to arrange that?

Hope I was able to point you in the right direction to get some answers to your questions!

 

[sgarrity]

joining in! We will be at GKTW at the same time. I think you posted on our site. We have the daughter adopted from China that is getting the wish trip. We also have 3 other children. We have a 12 year old (adopted China, age 12), 11 year old son (adopted Cambodia, age 11) and a biological son who is now 4.

We will be at GKTW from Dec 20 to Dec 26the so we should see you there!

 

[waiting4ourtrip]

Tommy has been to the drs alot lately. Now he has a break from them until Jan. We got a special needs stroller that will accomodate his oxygen tanks. This will be a big help when we are on our trip. The only thing is it doesn't break down and is kinda huge. I am a little worried about the flight.

Tommy's wish party is Dec 10, when our wish grantors will bring our packet and go over everything with us.

I can't believe we leave in 11 days!!!!!

Sincerely,
Grace

 

[waiting4ourtrip]

MAW called and said we are getting a check to help with food and incidentals while on our trip!! MAW is such an amazing organization!

 

[p00h4me]

Have a great time at Tommy's wish party tomorrow! His trip is coming up real soon! If I don't have a chance to post again, I wanted to wish you all a fantastic time in Orlando and would love to hear how Tommy and the family enjoyed the trip!