Ty's MAW Pre-trip :) arriving Feb 14, 2010

[cantwaittoseemickey]

Im offically starting our pre-trip thread woot woot!

Hi I am Tonya mom to Ty(10) and Sierra(12) and DW to Tim. We all absolutely love Disney!

Our son Ty was born on time(barely) but has quite a few medical conditions. He has a swallowing disorder that leaves him choking and gagging quite often. He also has a neurogenic bladder and is in the begining stages of preparing for reconstructive surgery. He also has spina bifida Occulta and had surgery in May to correct his teathered spinal cord. He is mostly fed by a feeding tube.

Ty was granted a WISH just last month. It did not take him long at all to know what his Wish was. To ride JAWS and go to Disney! We met with the WISH granters and he told them his Wish.We just found out that his Wish has been granted and he has been cleared medically to travel

Sierra is our sweet girl who has her own struggles. So this trip will be just as special to her as to Ty. She is so excited to pet the dolphins and see Shamu.

We are arriving February 14th 2010. A Valentines trip We will be staying at GKTW.We are beyond excited about this. To be able to stay in a place just like home is just unreal. We just cannot imagine what lies ahead for us. We are so grateful! He has quite a few apts coming up and this will be such a great thing to think about during them.

We are going to surprise them with the date on Christmas Morning. I am planning on doing something special in their stockings or a little box to let them know. I am not quite sure yet what to do but I will be working on it. Any ideas are greatly appreciated

 

[pipersmom]

Im offically starting our pre-trip thread woot woot!

Hi I am Tonya mom to Ty(10) and Sierra(12) and DW to Tim. We all absolutely love Disney!

Our son Ty was born on time(barely) but has quite a few medical conditions. He has a swallowing disorder that leaves him choking and gagging quite often. He also has a neurogenic bladder and is in the begining stages of preparing for reconstructive surgery. He also has spina bifida Occulta and had surgery in May to correct his teathered spinal cord. He is mostly fed by a feeding tube.

Ty was granted a WISH just last month. It did not take him long at all to know what his Wish was. To ride JAWS and go to Disney! We met with the WISH granters and he told them his Wish.We just found out that his Wish has been granted and he has been cleared medically to travel

Sierra is our sweet girl who has her own struggles. So this trip will be just as special to her as to Ty. She is so excited to pet the dolphins and see Shamu.

We are arriving February 14th 2010. A Valentines trip We will be staying at GKTW.We are beyond excited about this. To be able to stay in a place just like home is just unreal. We just cannot imagine what lies ahead for us. We are so grateful! He has quite a few apts coming up and this will be such a great thing to think about during them.

We are going to surprise them with the date on Christmas Morning. I am planning on doing something special in their stockings or a little box to let them know. I am not quite sure yet what to do but I will be working on it. Any ideas are greatly appreciated

Woohoo for another MAW PTR!! I can't wait to see pics of the kids, your family sounds so sweet. I'm surprising Piper with our dates (I hope!) at Christmas as well..she thinks we aren't going until 2011. I'm making a present for her with a Dsiney snowglobe, stuffed Mickey, the free customized maps, and a letter with the date. We're still waiting on our date, but we know it will be 2010, and have requested March. It's looking like it will be down to the wire as to whether I'll have the actual week or not.. . Anyway..looking forward to reading more!

 

[cantwaittoseemickey]

Aww I love surprises!! Congrats on your trip! I am still learning these boards as there is alot to go through lol. I have been reading for days getting lots of info. Still learning my way around so forgive me if I am not posting to everyones posts yet.

For those who have extended thier trip do you rent the van for the remainder days or do you have to take it back to the airport? How do you handle this? We are thinking about extending our trip by a day or two.

 

[kdzbear]

Welcome! I am so glad that Ty's trip has been approved!

 

[Momofwishkid]

another PTR. I cant wait to hear more about your family and your trip. I love that your surprising Ty on christmas that is going to make it so special!

 

[pacrosby]

Welcome!!!!! I think the planning is almost as much fun as the actual trip so dig in deep and have a ball. The Xmas morning surprise sounds great......and they're really old enough to 'get it' and enjoy the next weeks/months of planning and prep with you.

We are leaving in a couple of days and are one of those families extending our trip. I think not all chapters have the same policy but ours gave us the confirmation number and allowed us to just call the rental car company directly and extend the rental. They will pay for the first 7 days and we will be responsible for the last two. Apparently there are chapters that won't even allow extensions because they are afraid they will be left holding the bag but ours (MA/RI) had no reservations whatsoever. Hopefully yours will be as flexible and easy to work with as ours has been

Pamela

Matty's Wish Trip http://www.disboards.com/showthread.php?t=2325607

 

[yinyanggirls]

Welcome! It took me a while to figure this place out as well, but it is definitely worth it! Great people and great info here! Can't wait to read more about your family and your upcoming trip!

 

[cantwaittoseemickey]

One reason we were waiting to tell the kids is because my fil has bladder cancer. The day before Thanksgiving he found out he has brain cancer and just last week found out it is in his lungs. So it is hard to be excited about our trip and also a little hard to plan as we just don't know what his health state will be at that time. But after talking with our coordinator we feel alot better about the trip and that we can go ahead with our plans so we decided we would go ahead and tell the kids the date on Christmas.

Ty asked me last night if I knew when we were going and I told him no He acted like he didnt believe me lol.

 

[wdwislife]

I'm joining in! I'll be there for presidents week in February also!

 

[pipersmom]

I'm sorry to hear about your FIL, maybe doing the planning and such can at least give you and your family a bit of distraction.

 

[cantwaittoseemickey]

Thank you. It is definately helping.

I'm sorry to hear about your FIL, maybe doing the planning and such can at least give you and your family a bit of distraction.

 

[cantwaittoseemickey]

The plane tickets will be booked very soonAnd only two more weeks till the kids will know. Ty's ped almost blew it yesterday. He said the date but I shunned it off and explained to him later lol.I really wanted to book a character meal at least but it looks like we wont be able to do anything extra. They have decided to cut everyones pay at my hubby's employer the first of the year. With the amount we have to pay in meds and supplies for Ty it is really going to hurt. I have tried to get help but we just don't qualify and it stinks.

He is on his 3rd antibiotic for sinus/gtube infection. He has also not gained any wieght in 6mos. We can definately tell by the way he has to hold up his pants all the time. But he is so tall that we can't get the waist any smaller. He was supposed to have a very important swallow test Monday but since he was sick we had to reschedule so it wont be till after Christmas. He has quite a few apts before the new year so we will be busy. It will definately make time go by fast. The end of January will be here and I will wonder where the time went and need to get things done lol. We are desperately trying to keep him as healthy as possible.

 

[cantwaittoseemickey]

I'm working on the itinerary today . Does the kids staying at GKTW get in early at the Extra magic hours?

Also with the 3 day park hopper pass do we have to use it 3 days in a row or can we use it any 3 days we want?

 

[kdzbear]

I'm working on the itinerary today . Does the kids staying at GKTW get in early at the Extra magic hours?

Also with the 3 day park hopper pass do we have to use it 3 days in a row or can we use it any 3 days we want?

If you stay at GKTW, you do not get the Extra Magic Hours. I am sorry!

The three day park hopper can be used any three days that you choose. I know that there is an expiration after a certain number of days, but I am pretty sure you will not hit that number during your trip.

 

[cantwaittoseemickey]

Ok thank you!

Almost done with a pre-pre itinerary if that makes sense I will try to post it soon! We have just a little over a week before we get to spill the date I will be working on calenders for each of their stockings tomarrow. They are printed out I just need to put them together then color them. Then I need to get to my moms and borrow some craft supplies to decorate them.

I have talked to both of the kids schools and we are trying to arrange NO work to be done on the trip. There is no time for homework on our wish trip. It's just not in the itinerary lol.

Thursday Tyler is having a minor surgery. He will be having his cystoscopy done before he see's the surgeon next week to see what the plan is.

 

[dmbfan]

Is this Tonya from the P2P boards? If so, I am Christine, Jake's mom..however I am not on P2P anymore, but if this is not I am sorry.

We are going to Disney on the Feb 16th thru the 23rd and we are going t be volunteering at GKTW at least one night, hopefully two ( we are staying on Disney propertry and do not have a car, so we are not sure if we can do more than 1 night).

They are working on trying to get us in the house of Miracles, cause Jake really wants to work the "wish pillow" machine. You will have an amazing time...if you want to see what the village looks like and Jake's trip, click they link in my siggy. If you want to be totally surprised, than do not look, cause I have TONS of pictures in the thread.

The members here are just wonderful...

 

[cantwaittoseemickey]

Yes it is!! Hey there Christine how are you all doing? I hope you and Jake are doing well. How awsome we will be there at the same time! That is great you are volunteering at GKTW. I hope to do that one day. We will probably see you then! It would be so nice to meet you! Do you know which day you are volunteering?

I will definately check out your link. Thank you

 

[dmbfan]

Yes it is!! Hey there Christine how are you all doing? I hope you and Jake are doing well. How awsome we will be there at the same time! That is great you are volunteering at GKTW. I hope to do that one day. We will probably see you then! It would be so nice to meet you! Do you know which day you are volunteering?

I will definately check out your link. Thank you

Jake is doing great. We have good days and bad days, but since it is amazing when you listen to your child and not what the drs think you should do. Right now he is totally off TPN, and even J feeds. He gets just IV fluids at night and has been eating more by mouth. He is struggling in the weight area, but he has not been back in the hospital since July and to US, he is doing great. GI is impressed and shocked too...so in cause, the less invasive the better, and mother's gut just seems to always be right.

Not sure what the dates are yet, however we put in to do a 5-9pm ( as no is really around during the day) and they told us they will try to get us in the Castle of Miracles, so Jakers can work the pillow machine...I will be sure to let you know the dates when I know...You have NO idea what kind of week you are going to be in for....

 

[cantwaittoseemickey]

We should definately see you then. I have done the planning around some of the things at GKTW especially Thursday for the Christmas party. Still need to get my "itenerary" on here. I have it done but if it will work out depends on how things go. lol

I am glad to hear Jake is doing so well. How awsome that he is off tpn and J feeds! I hope he begins to gain weight soon by eating by mouth. Did they do a Fees test with Jake? I don't know why but I was thinking he had one. Ty will be having one on Monday to see if they can get more answers with his swallowing.

We recieved some very bad news with Ty Thursday. His right kidney is beginning to be affected and he is spasming really hard. Beginning on Monday after we see the surgeon again he will have to cath all night and start some gentimycin flushes. He is also going to probably have some botox injections in his bladder although he said they may not work so I we are going to need to talk about it more. He is giving him 6-8 weeks to show improvement or he will be scheduled for the bladder reconstruction surgery. He said he will wait till after we get back but not much longer.I really hope this last treamtent helps as I am terrified of that surgery. Big infection risk and Ty has had his share of infections.

On the trip note I think I blew the date lol. I was talking to Ty's nurse in the pacu and I told her when we had planned on going. Ty was pretty awake during that time lol. Oh well 6 more days tell we are out with it and I dont have to tip toe around lol!!! Still need to work on my calenders. Needed to have them done before today darn it.

 

[cantwaittoseemickey]

Countdown calenders are almost done I cannot wait to get them all put together. I will take a pic when they are all done.