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


cantwaittoseemickey
12-04-2009, 12:01 PM
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:yay:

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:love: 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
12-04-2009, 09:28 PM
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:yay:

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:love: 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!! :banana: 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.. :worried:. Anyway..looking forward to reading more!

cantwaittoseemickey
12-06-2009, 11:28 AM
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
12-06-2009, 01:57 PM
Welcome! I am so glad that Ty's trip has been approved! :banana::woohoo:

Momofwishkid
12-06-2009, 05:15 PM
:cool1: 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
12-06-2009, 06:04 PM
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:santa:

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

yinyanggirls
12-07-2009, 01:46 AM
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
12-07-2009, 10:27 AM
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 :rotfl:He acted like he didnt believe me lol.

wdwislife
12-07-2009, 10:45 AM
I'm joining in! I'll be there for presidents week in February also! :)

pipersmom
12-07-2009, 10:48 AM
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. :hug:

cantwaittoseemickey
12-09-2009, 01:38 PM
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. :hug:

cantwaittoseemickey
12-09-2009, 01:51 PM
The plane tickets will be booked very soon:cool1:And 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
12-12-2009, 10:15 AM
I'm working on the itinerary today :cool1: . 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
12-12-2009, 01:54 PM
I'm working on the itinerary today :cool1: . 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.

:goodvibes

cantwaittoseemickey
12-15-2009, 11:13 AM
Ok thank you!

Almost done with a pre-pre itinerary if that makes sense:rotfl: I will try to post it soon! We have just a little over a week before we get to spill the date :cool1: 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
12-16-2009, 09:01 AM
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...:flower3:

cantwaittoseemickey
12-16-2009, 09:23 AM
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
12-16-2009, 08:37 PM
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....:thumbsup2:thumbsup2:thumbsup2:thumbsup2

cantwaittoseemickey
12-19-2009, 10:42 AM
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
12-19-2009, 07:49 PM
Countdown calenders are almost done :cool1: I cannot wait to get them all put together. I will take a pic when they are all done.

dmbfan
12-19-2009, 08:46 PM
Countdown calenders are almost done :cool1: I cannot wait to get them all put together. I will take a pic when they are all done.

Oh can't wait to see it...can we can a picture of Ty holding the calendar?

What is the fees test? Sorry your going thru so much right now, I wish there was something I could say...but I can give u a :grouphug:

cantwaittoseemickey
12-24-2009, 09:22 AM
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:santa:

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

Thank you! I hope you all had a wonderful trip. I cannot wait to hear all about it!

cantwaittoseemickey
12-24-2009, 09:49 AM
Ok here are the pics of the calenders and my sweeties. It happened a little early b/c Sierra stayed all night with a friend and somehow figured out when we were leaving and so the conversations began right in front of Ty. Oh well now I can talk about it freely:cool1:

dmbfan
12-24-2009, 10:12 AM
Cool calendars....:thumbsup2 It will be here before you know it.

By the way we have our dates for GKTW, we will be in the castle of miracles on Feb 17th and Feb 21th from 5-9pm...so make sure you stop by on one of those nights and say HI to us....:cheer2:

cantwaittoseemickey
12-24-2009, 10:36 AM
We will definately try to pop in. The 17th is our long day of dhs and epcot but hopefully we can get in a little early to see ya. I think the 21st is when we are leaving. Maybe we can meet up at one of the parks:)

yinyanggirls
12-31-2009, 12:04 AM
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.

We are extending our trip and our chapter told us to get an entirely new rental contract. Once I find out who they are using, I plan on calling the company and asking if there is any way we could keep the same vehicle so we don't have to take the time to switch our luggage and stuff. (We are leaving Orlando for our extension).

Cute calendars! :thumbsup2 I am still working on our countdown calendar, but I also cheated and bought some at the dollar store and some stickers and figured I'd let them each have their own to countdown on. Funny that you had to reveal the dates early. I know I wouldn't have been able to hold it in!

cantwaittoseemickey
12-31-2009, 01:10 PM
We are extending our trip and our chapter told us to get an entirely new rental contract. Once I find out who they are using, I plan on calling the company and asking if there is any way we could keep the same vehicle so we don't have to take the time to switch our luggage and stuff. (We are leaving Orlando for our extension).

Cute calendars! :thumbsup2 I am still working on our countdown calendar, but I also cheated and bought some at the dollar store and some stickers and figured I'd let them each have their own to countdown on. Funny that you had to reveal the dates early. I know I wouldn't have been able to hold it in!

I wish I would have cheated a bit. lol they probably would have turned out a little better. I went down my parents basement and found some old stickers and little pom poms.

cantwaittoseemickey
12-31-2009, 02:02 PM
Finally getting my itinerary finished:cool1:

Sunday we will fly in and grab our rental van then off to GKTW. We will likely stay at GKTW all day but I threw in there we might want to go to DTD just in case;) We will do a little swimming because that is how the kids always begin their trips. We will do orientation but not sure what time yet.

Monday is Magic Kingdom day all day.The highlights of MK will be DUMBO!! Yes Dumbo because we didnt get to ride it when we were on the miserable trip in 08. And of course the Carousel of Progress just because the kids know I DO NOT like that ride lol. But I am going to surprise them and just act so happy to ride it and hope to get their confused faces on video:rotfl2: .There will be lots more but those are the must do's.

Tuesday is Animal Kingdom day. I am trying to braven up and ride Mount Everest. For my buddy. But the kids may have to do that one on their own. And if I know Sierra she will chicken out just before she gets on. Then we will head back to GKTW for Family Fun night.

Wednsday is DHS and Epcot Day. I am planning on doing these two parks the same day because I have a feeling DHS will not appeal to the kids very well but I am not sure. And I do not believe it will take too long to do Epcot. Then I hope to get back to GKTW by 9pm to meet Christine and Jake (Dmbfan):banana:

Thursday is Typhoon Lagoon weather permitting. Not sure if the water is very warm there or not but Ty really wants to do a water park. He really wanted to go to Blizzard Beach but it is closed while we are there:sad2: Then we will head over to Universal Studio's to make sure we ride JAWS :scared1: lol Now the last time I rode that ride was 15yrs ago and my eyes were closed the whole time. But they must stay open this time cause I have to get pics of Tyler screaming when he comes up at him. We are going to make sure he is on the side of the boat that leans in toward him lol. Sierra cannot wait to ride it either. She loves things like that. We also hope to catch a stunt show but Im not sure those are during this time. Then we are definately heading back to GKTW for Christmas:woohoo:

Friday we will head over to Sea World. This is another biggie with the kids. They cannot wait to pet the dolphins. I would LOVE to arrange it so that they could swim with the dolphins but I have no idea how we would do that. Tyler has always wanted to swim with dolphins. I just cannot wait for this. I am so excited!! I just cannot wait to see the kids faces when we walk through the gates of Sea World. We will also catch a Shamu show (at least one:thumbsup) Sierra is going to absolutely love Sea World. She is a big Sea animal lover. She has always wanted to be a veterinarian or Animal Cop. And I know once she sees the Dolphins and Shamu she is going to lean more toward Sea Animals because they have always had a special place in her heart. Then we will go back to GKTW for the Pirate and Princess Party.

Saturday our plans are to go to Kennedy Space Center. Tyler loves anything to do with Space!Then we will head back to GKTW for Mayor Claytons Birthday Party.

Im sure there will be alot of in betweens. Like eating and taking breaks.And we will be able to enjoy the fireworks as Ty will have his headphones (he didnt in 08 and that was a huge mistake).

Then Sunday we are homeward bound and ready to see our doggies!

yinyanggirls
12-31-2009, 05:57 PM
Lookin' good!
I am planning to combine DHS with AK because Epcot and FW seem so large, even if it is not as interesting to the kids. I'm afraid just walking through it will take forever. Not sure though.
I think the only place to swim with the dolphins in Orlando is at Discovery Cove, which is a separate Sea World park. It requires it's own admission, not provided by GKTW, as far as I'm aware.

cantwaittoseemickey
01-01-2010, 12:44 AM
Thank you . I didnt realise it was too seperate things. I will need to look into that more. It would be really neat! I chose DHS with Epcot b/c there wrent too many rides were were that thrilled about. But it might be different this time. I am all in for forgetting the itenerary and just going with the flow and that is what we will probably have to do as Ty throws a huge fit if we dont go by his timing. And that can set the whole day off.

maroo
01-01-2010, 11:15 PM
Here are my quick thoughts on the three days you have in Disney...

Most every family spends a full day at the MK - there are a ton of things to do there.

Between the last three parks...there are LOTS of things to do - more than any family could do in one trip...so each family has to make a list of the things that would appeal to each...

For me...here are the must dos at the other three parks:

Epcot:
World Showcase - I would skip this if I only had three days with kids...unless my kids were excited about the countries. Not that it isn't great - there are fun things there to do - but not anything a family can't live without, in my opinion.

Future World - Must Do's, in my opinion:
Wish Lounges - there are at least 2 in Epcot - your wish trip will be the ONLY time you get to see these...so go for it! :)
Soarin' - if your kids are tall enough and not afraid of heights - best ride in Disney.
Turtle Talk with crush - I love this, especially for little kids that would "talk" to Crush.
GREAT place to see a BUNCH of hard to find characters - use the button and see them all! :thumbsup2

Animal Kingdom:
Safari seems like a must do - but I could skip it. Like driving through a zoo...unless that is your thing.

Expedition Everest - great roller coaster - not TOO terribly fast, does go backwards.

Lion King - MUST DO show! Show them your BUTTON - sit toward the front!

Finding Nemo Show - MUST DO show! Sit in the BACK section on the FRONT row...best seats in the house! Try NOT to sit in the front section...The whole point of the show is that these puppets are being worked by humans and if you sit too close, you can see the "humans" and miss what the puppets are doing (which are supposed to be the focus)...being so close tends to ruin the magic for me for this particular show.

DHS:
This is a harder park...as it depends a lot on YOUR family and their interests...

Toy Story is a must for everyone! But other than that...each attraction stands on its own...to do everything would really take all day - and maybe two if you only do parts of days...

anyway...I am sure you didn't want THIS much info...but that was on my brain tonight!

cantwaittoseemickey
01-02-2010, 09:09 AM
Here are my quick thoughts on the three days you have in Disney...

Most every family spends a full day at the MK - there are a ton of things to do there.

Between the last three parks...there are LOTS of things to do - more than any family could do in one trip...so each family has to make a list of the things that would appeal to each...

For me...here are the must dos at the other three parks:

Epcot:
World Showcase - I would skip this if I only had three days with kids...unless my kids were excited about the countries. Not that it isn't great - there are fun things there to do - but not anything a family can't live without, in my opinion.

Future World - Must Do's, in my opinion:
Wish Lounges - there are at least 2 in Epcot - your wish trip will be the ONLY time you get to see these...so go for it! :)
Soarin' - if your kids are tall enough and not afraid of heights - best ride in Disney.
Turtle Talk with crush - I love this, especially for little kids that would "talk" to Crush.
GREAT place to see a BUNCH of hard to find characters - use the button and see them all! :thumbsup2

Animal Kingdom:
Safari seems like a must do - but I could skip it. Like driving through a zoo...unless that is your thing.

Expedition Everest - great roller coaster - not TOO terribly fast, does go backwards.

Lion King - MUST DO show! Show them your BUTTON - sit toward the front!

Finding Nemo Show - MUST DO show! Sit in the BACK section on the FRONT row...best seats in the house! Try NOT to sit in the front section...The whole point of the show is that these puppets are being worked by humans and if you sit too close, you can see the "humans" and miss what the puppets are doing (which are supposed to be the focus)...being so close tends to ruin the magic for me for this particular show.

DHS:
This is a harder park...as it depends a lot on YOUR family and their interests...

Toy Story is a must for everyone! But other than that...each attraction stands on its own...to do everything would really take all day - and maybe two if you only do parts of days...

anyway...I am sure you didn't want THIS much info...but that was on my brain tonight!



World Showcase we have already decided to skip.Unless we have extra time.
I am so trying to braven up to ride expedition everest. I really want to ride it and I know the kids would love it. As long as its not too bad I can ride it.lol

Thank you for the Wish lounge info. Will they give us a map that has the wish lounges on there? We will definately use those as my dh will need knee surgery when we get back and we will be doing quite a few breaks.

Sourin and turtle talk are definately added to the list.

The safari-We are definately doing this one. I could do without it but Sierra and Tyler and dh will love it.

Toy story added to the list:)

Lion King-this one has me a little worried with Ty.Is it very loud? Do they come up to you? Also with him being in his wheelchair will we be able to sit in the front? I am going to try it and he just might do ok with his headphones on but we may end up having to leave if it is too much for him.

Same thing with Nemo. Can we sit in the back with his wheelchair? He will LOVE this show and I am so excited to see it. We have always wanted to see this one.

Thank you for all the wonderful suggestions. Please keep them coming. I am adding them to my list. I want to see and do as much as possible:lovestruc

cantwaittoseemickey
01-02-2010, 09:20 AM
Our trip is coming up so fast. I have a ton of things to do before we leave. Just a week ago it felt like I had plenty of time. Now it seems like I need to move move move. Dh needs a cortisone shot in his knee before we leave so I am scheduling that Monday. Need to get Ty in to the ped as it seems like he has a cyst or something on his face. We thought it was a lymphnode but the family consenus on New Years is it feels more like a cyst. Monday is my dads birthday so we are all going to Red Lobster:woohoo:

Today is try on summer clothes day that way I can go shopping while the kids are in school in case they need something. I borrowed my mom and sisters luggage. Maybe one day I will buy our own :rotfl2: Im trying to figure out what I want to put the "extra's" in that the kids get. A carry on or check it.

Thursday night we spent the evening playing cards. We sat and chatted about airplanes and our trip. It made it all so real. I had butterflies in my stomache before long.I am not a fan of flying by no means and told hubby I was ready to not fly. But this is Ty's wish so we will carry on. I just pray for peace so I can enjoy this flight and this trip.

maroo
01-02-2010, 10:31 AM
Safari has a special wheelchair car where he can just drive his w/c in there (or you drive it). :)

Toy Story also has a special wheelchair car so that he can ride and play in his wheelchair.

Lion King - It is pretty intense. You will have a spot right up front with a wheelchair automatically (but you need to get there fairly early - 30 min if the park is busy). They will come up to him a bit and they are all really big out there... there are lots of people in stilts and lots of makeup - and fire. They also have smoke up there that aggravates my asthma and I always use my inhaler if I sit up front.

Nemo - the have GREAT w/c seating right at the back of the front section - ask to have him sit there. :)

I think that is it??

cantwaittoseemickey
01-02-2010, 11:45 AM
Ohh thank you Maroo! I will have to think on the Lion King. That might be a little too much for him. But the headphones are going to totally make this trip possible. It just tones it down for him where he isnt in total sensory overload. He can walk but long distances and the fact of traveling taking its toll on him Im sure he will be in his chair most of the time.

He is so looking forward to the dolphins and Shamu! Im so glad I did a whole day just for Sea World. I need to get the times for dolphin feeding and anything else that they can do there.

kellyw8863
01-02-2010, 01:13 PM
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.

We are arriving February 14th 2010. A Valentines trip:love: 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.


Hey there! I thought I recognized you from P2P - I'm "bananamama" there.:goodvibes I can't believe I just found your PTR! Ali seems to have some similar "issues" to Ty. She also has a tethered spinal cord (post repair) and significant swallowing issues. All of her liquids are thickened, and she's totally NPO during periods of illness when her swallowing really goes to pot. We're hoping to go over April vacation, but February is our second choice if that doesn't work out.

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 :rotfl:He acted like he didnt believe me lol.

I'm so sorry to read this.:hug:

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.


Not Christine,:laughing: but Ali has never had a FEES done. No one can tell us why she can't swallow and basically attribute it to the mito. Frustrating! I hope you get some answers and that you see some quick improvement with his bladder function.


Today is try on summer clothes day that way I can go shopping while the kids are in school in case they need something. I borrowed my mom and sisters luggage. Maybe one day I will buy our own :rotfl2: Im trying to figure out what I want to put the "extra's" in that the kids get. A carry on or check it.

Thursday night we spent the evening playing cards. We sat and chatted about airplanes and our trip. It made it all so real. I had butterflies in my stomache before long.I am not a fan of flying by no means and told hubby I was ready to not fly. But this is Ty's wish so we will carry on. I just pray for peace so I can enjoy this flight and this trip.

I need to do the same thing with the girls. I'm afraid that none of Maya's clothes are going to fit her and I'm not going to be able to find many good deals on summer stuff before we go. Oh well! An excuse to shop, I guess! I hate flying, too, and I even went so far as to look up distance to Disney using our GPS.:lmao:

Thanks for sharing, and I look forward to following along!

Kelly

cantwaittoseemickey
01-02-2010, 01:48 PM
ahh Kelly hi! I thought I recognised your girls!! Welcome!!

I am waiting to talk to Ty's speech therapist b/c since this Fees test things have even gotten worse. And the Fees test showed his little flapper thing working ok so it gave us no answers.The choking is daily now especially with meds as there are some that just cannot go through his gtube. I tried that oralflow cup and that didnt help at all. Im sure anxiety about it is only making things worse. Just this morning he choked on his pretzel and he said his milk saved his life. I cannot count the times he has choked this past week and it is just so frustrating.

That is too funny about the GPS. I am going to take some dramamine for the flight. It helps with the motion sickness but also helps take the edge off too.

It would be great if you could go in February. It would be so nice to meet you!

pnutallergymom
01-02-2010, 02:27 PM
Hi Tonya,

I just wanted to stop in and say that I am enjoying reading your PTR. I am sorry to hear about your FIL.

Ty is adorable!! My kids aren't that interested in Epcot, except for the highlights....but just today, Brenna (8) asked if we could walk around there and "sample" all the food from different countries!! I said "sounds good to me"!! I LOVE food!!!

I'll continue to follow along!! Your trip will be here before you know it!!

dmbfan
01-02-2010, 06:36 PM
Our trip is coming up so fast. I have a ton of things to do before we leave.


:cool1::cool1::cool1::cool1::cool1::cool1::cool1:: cool1::cool1::cool1::cool1:

You know once we got there, we ditched what we had on "our trip" and just went went the flow.

The thing you want to make sure you do is get the times for Fantasmic at Hollywood Studios, cause it only plays twice a week and just one time, usually 7pm. Wishes fireworks is a MUST a MK, and that is everynight at 8pm following spectromagic...which is another MUST. If Jake could do all three of these every day for our trip, he would.

His IPOD has all the songs from Spectromagic, Fantasmic and Wishes..:rotfl2::rotfl2::rotfl2::rotfl2:

Oh the one thing we did not do on his Wish trip, was seeing Illumanations at Epcot, and this trip we will be...:thumbsup2

cantwaittoseemickey
01-02-2010, 08:33 PM
:cool1::cool1::cool1::cool1::cool1::cool1::cool1:: cool1::cool1::cool1::cool1:

You know once we got there, we ditched what we had on "our trip" and just went went the flow.

The thing you want to make sure you do is get the times for Fantasmic at Hollywood Studios, cause it only plays twice a week and just one time, usually 7pm. Wishes fireworks is a MUST a MK, and that is everynight at 8pm following spectromagic...which is another MUST. If Jake could do all three of these every day for our trip, he would.

His IPOD has all the songs from Spectromagic, Fantasmic and Wishes..:rotfl2::rotfl2::rotfl2::rotfl2:

Oh the one thing we did not do on his Wish trip, was seeing Illumanations at Epcot, and this trip we will be...:thumbsup2

Oh I was just thinking about the parades and fireworks earlier.I need to find the dates and times for those. We haven't seen Fantasmic as the kids have never been there. I definately want to do Wish's and Spectromagic.

Where do I find the dates and times for Fantasmic?

Im really leaning on seeing what I can do with Dine with Shamu. The kids would love sitting next to Shamu.

dmbfan
01-02-2010, 08:45 PM
Here is just the fireworks and parades for the month of Feb...:cool1:

http://www.wdwinfo.com/wdwinfo/febfw10.cfm

Here are the park hours for all the parks as well. Plus I made spreedsheet and printed everything out as far as times and shows go...;)

http://www.wdwinfo.com/wdwinfo/feb10.cfm?requesttimeout=1000

The ONLY neg, and to be honest, I do not think it is really a negative at all, but if I had to find one, it would be that you do not get extended hours as a wish family at GKTW, but really, it does not matter one bit...:thumbsup2

cantwaittoseemickey
01-02-2010, 09:07 PM
Hi Tonya,

I just wanted to stop in and say that I am enjoying reading your PTR. I am sorry to hear about your FIL.

Ty is adorable!! My kids aren't that interested in Epcot, except for the highlights....but just today, Brenna (8) asked if we could walk around there and "sample" all the food from different countries!! I said "sounds good to me"!! I LOVE food!!!

I'll continue to follow along!! Your trip will be here before you know it!!

Welcome to our ptr Shannon. Thank you for following along:) Definately let us know what you think of all the food and what your favorite is!

cantwaittoseemickey
01-02-2010, 09:12 PM
ok well I found something wrong with the itenerary. I have Disney Parks scheduled for Mon, Tues, Wed and Thursday with Thursday being Typhoon Lagoon. I can't do that as we have a 3 day park hopper not a 4day. I think I got carried away. So its back to replanning. Im about to leave the itenerary at home:rotfl:

maroo
01-02-2010, 10:02 PM
ok well I found something wrong with the itenerary. I have Disney Parks scheduled for Mon, Tues, Wed and Thursday with Thursday being Typhoon Lagoon. I can't do that as we have a 3 day park hopper not a 4day. I think I got carried away. So its back to replanning. Im about to leave the itenerary at home:rotfl:

Oh...wait!

Call GKTW before you replan...

I *think* they have separate tickets to the water parks that would not count against your park days...check and see...

800-995-Kids. :)

dmbfan
01-02-2010, 10:38 PM
yes and make sure it is open, cause I have a feeling it is closed until sometime in March, TL that is...:confused3 Just double check t make sure.:thumbsup2

kellyw8863
01-03-2010, 02:36 PM
ok well I found something wrong with the itenerary. I have Disney Parks scheduled for Mon, Tues, Wed and Thursday with Thursday being Typhoon Lagoon. I can't do that as we have a 3 day park hopper not a 4day. I think I got carried away. So its back to replanning. Im about to leave the itenerary at home:rotfl:

I did the exact same thing.:lmao: But, in hindsight, I'm glad. It's forcing us to "schedule" some down-time. Otherwise, I think it would have been too tempting to over schedule. I would definitely check out the water park tickets available through GKTW. I think it's on their site somewhere, but I could be wrong. It's been known to happen!:rolleyes1

cantwaittoseemickey
01-03-2010, 08:19 PM
Uh ohhhh. Dh's knee is swollen and filled with fluid. He has a torn miniscus and has already had one cortisone shot to tie him over till we get back. But it looks like he either will need another one or he is going to need surgery soon.I hope I can get him in to the ortho tomarrow but I know what he is going to say. I dont think there is enough time to get the surgery and recouperate before we leave.So far nothing has helped it is only getting worse. Anyone had a torn miniscus before?

cantwaittoseemickey
01-04-2010, 01:40 PM
6am:scared1:Yep Ty couldnt sleep last night so he didnt fall asleep till 6am that is when I got up to get Sierra up for school. I walked past his room this morning and there he was wide eyed. He finally dozed off and I let him sleep till noon then took him into school for a few hours. It kind of worked out going for a few hours before a full day just after a long break like that.

Dh's knee is better today and he has an apt on Wed so that is good. I was afraid they would wait at least a week or so to get him in.

We should hear from MAW on the flights this week:cool1:

maroo
01-04-2010, 03:00 PM
Oh no! Not knee surgery! That would be stinky!

Let us know how it goes!

I will be praying for you guys. :)

cantwaittoseemickey
01-04-2010, 09:08 PM
Oh no! Not knee surgery! That would be stinky!

Let us know how it goes!

I will be praying for you guys. :)

We will find our more at his dr apt. Hopefully he has a plan so dh can "enjoy" this trip too. Also We got news tonight from his father that the drs are giving him 6-12 months that the cancer is in his lungs now and he needs double chemo. I am so sad for my dh and his father and their sister. My hubby broke down and cried tonight. He needed to do it it has been festering since April.

We got some wonderful MAW trip news today!! We go our flight times. YAY!!!! Early flight in and a later flight home. PERFECT!! And best of all NO LAYOVERS!! lol :cool1::banana: We are all soo excited. We need this trip right now more then anyone would ever know. We know we are going to lose my husband father/kids grandpa and this will maybe help us to come as a family to talk about it and just make sure we take a few moments of ever day to think about him. And give him phone calls to let him know what he means to us.

THe kids are extatic!!!:banana::banana:

Tonya

pacrosby
01-06-2010, 06:41 PM
YAY on the great flight times!! We had a 7 am flight in (got us there at 10 am) and a departing flight at 8 pm which really allowed us to feel like we had a full 9 days (we extended by two). Makes a difference.

So very sad to hear about fil. Your mention that your dh broke down and cried actually brought tears to my eyes. Treasure every day.

Pamela:santa:

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

Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

cantwaittoseemickey
01-06-2010, 08:19 PM
The good news is Ty met 2 of his goals in pt today:cool1: And he actually laughed alot for once.

The bad news we get home from Disney on Sat night. That Monday dh is having knee surgery. So I get to come home get unpacked rest one day then Monday morning be at the surgery center bright and early. So I guess there will be no time for the Disney let down?? :rotfl2: NAHHH!!! The dr did give him 2 cortisone shots today then will give him 2 more 2days before we leave.

Pamela yes it really hurt to see dh cry. He has cried maybe 5 times since I have known him and we are close to 20yrs. He is going through so much right now with his knee and his dad.

pipersmom
01-06-2010, 10:25 PM
I'm sorry to hear your DH and family are going through so much right now Tonya, but glad you have the trip to help keep you upbeat. :hug: Keeping you and your family in my thoughts.

dmbfan
01-07-2010, 07:47 AM
Oh early flights mean no sleep the night before...:rotfl:

It will be here before you know it...:cool1::cool1::cool1:

Sorry to hear about all that is going on right now....:grouphug:

yinyanggirls
01-07-2010, 09:49 PM
Ugh! I hope DH can get around okay. Will you guys consider renting a wheelchair for him or does his doc think he can do it?

I can understand your added stress right now. We are so excited to be close to our trip dates but now my grandmother is in the hospital again so I'm worried about her. It's hard to be worried AND excited. :confused:

cantwaittoseemickey
01-07-2010, 09:59 PM
Ugh! I hope DH can get around okay. Will you guys consider renting a wheelchair for him or does his doc think he can do it?

I can understand your added stress right now. We are so excited to be close to our trip dates but now my grandmother is in the hospital again so I'm worried about her. It's hard to be worried AND excited. :confused:

I am so with you on that. I am so excited to go but I am so worried about dh his father and the let down of the kids if we do not make it. But God is in control. He is the one that makes the decsions we have apon us.

I have some clothes packed and the mdical supplies we have to pack onboard packed. Now I need to list it all out and include the massive amount of meds so that the ped can sign off on them so that they will have a Dr note for them just in case things get a little iffy.

I hope he can get around ok. If not can GKTW help us with that? Just if he ended up needing something. ?And Great NEWS My mom just said they will watch out doggies for us! I was so worried about putting them in the kennel. They have never been there before and our little one is a special needs doggie. She is very nervous around people. But dont get me wrong she is ROTTEN!! :rotfl:So Im happy that is one less thing I have to worry about woot woot!

yinyanggirls
01-08-2010, 12:08 AM
I am so with you on that. I am so excited to go but I am so worried about dh his father and the let down of the kids if we do not make it. But God is in control. He is the one that makes the decsions we have apon us.

I have some clothes packed and the mdical supplies we have to pack onboard packed. Now I need to list it all out and include the massive amount of meds so that the ped can sign off on them so that they will have a Dr note for them just in case things get a little iffy.

I hope he can get around ok. If not can GKTW help us with that? Just if he ended up needing something. ?And Great NEWS My mom just said they will watch out doggies for us! I was so worried about putting them in the kennel. They have never been there before and our little one is a special needs doggie. She is very nervous around people. But dont get me wrong she is ROTTEN!! :rotfl:So Im happy that is one less thing I have to worry about woot woot!

Ah yes. Arranging things for our little fur babies is a whole 'nother stress, isn't it? I'm lucky we made some new friends this past year who love their dog as much as we do and have to travel back east for family visits every year. So we have traded a couple of times before and this is what we are planning for our trip. Our dog is a grandma but pretends to be a puppy and this dog is a giant lab who acts like a small child. He is actually one of my 4 yr old's best friends. :laughing:

cantwaittoseemickey
01-08-2010, 02:10 PM
Oh early flights mean no sleep the night before...:rotfl:

It will be here before you know it...:cool1::cool1::cool1:

Sorry to hear about all that is going on right now....:grouphug:

I think we need to be at the airport 2hours early? So I think we are going to need to be packed and ready to go by 4am:scared1:

So the dogs are taken care of and I talked to the hhc company and we have our ship dates for his supplies :banana:

I picked up some small toiletries yesterday and I got dh to try some of last years clothes on finally. So those can be packed. He is as bad as the kids when it comes to trying on clothes:lmao:

cantwaittoseemickey
01-08-2010, 02:42 PM
Ty is in alot of pain right now with his stomache. I am not sure what is going on but he is hurting pretty bad. Im waiting for dh to get home as he is on his way home.

Momofwishkid
01-08-2010, 04:07 PM
I dont know how I missed subbing to your PTR. So sorry, but Im now a follower. It sounds like your planning is going great. Im so sorry to hear about your FIL. Hoping Ty's stomach issues today are nothing to serious. He will be in my thoughts. Please keep us updated.

pipersmom
01-08-2010, 05:02 PM
Keeping you and Ty in my thoughts and hoping it's nothing major with his stomach! :hug:

dmbfan
01-08-2010, 05:50 PM
I did want to mention that GKTW has video cameras that they let you borrow for your trip, and you get to take the CD's home with you ( you could have anywhere from 3 to 20...:thumbsup2 I reccomend doing that.

As for a wheelchair, not sure, but I know Disney parks themselves have them, and I am sure as a Wish family, it will not be a charge. Just call the MK and find out.

Hope Ty is feeling better soon.

kdzbear
01-08-2010, 07:11 PM
I hope you figure out what is going on with Ty's stomach.

As for DH's knee, I am not sure how he did with the first cortisone shots, but you might want to do it 3-4 days prior to your trip. When I had them in my knees, the pain from the shots was worse the second day after the shot until the shot took effect a few days later. I hope the surgery goes well.

I am also happy that you have awesome flight times! :grouphug:

cantwaittoseemickey
01-08-2010, 08:49 PM
Thank you Christine for the info on the camera. That will definately help! Do they use a memory stick then convert it over?

We arent exactly sure what's going on with Ty's stomache but our guess is he is impacted yet again. Apparently he was hit in the stomache at school with a chair back(the kid got out of his seat and Ty just happened to be behind him) and since it didnt hurt until he got home (Ty does not feel pain alot of times until it is severe) that we think the stool got shoved up farther. So I had called the ped just to make certain he didnt want us to go out to have him checked but he was comfortable with my plan of doing another cleanout and seeing where we get with it. Ty has not been "himself" since before Christmas anyways because he is barely getting any sleep. We have moved his bladder med to the morning because we think this is the cause.Im sure you all know what I mean when I say it just takes "one" thing to make everything "off".I am giving the new time till Monday to work then if not the uro will get a call. But the bad thing about giving it to him in the morning is that the heat intolerance doubles and he gets really dry mouthed with it. arr no happy medium here.

cantwaittoseemickey
01-08-2010, 08:52 PM
I'm sorry to hear your DH and family are going through so much right now Tonya, but glad you have the trip to help keep you upbeat. :hug: Keeping you and your family in my thoughts.

Thank you we really appreciate that. Yes this trip is keeping me up beat. Only my dh is getting tired of hearing about Disney:lmao:

cantwaittoseemickey
01-08-2010, 08:57 PM
I dont know how I missed subbing to your PTR. So sorry, but Im now a follower. It sounds like your planning is going great. Im so sorry to hear about your FIL. Hoping Ty's stomach issues today are nothing to serious. He will be in my thoughts. Please keep us updated.



Thank you for stopping by and following Ty's PTR:lovestruc It is taking me a bit to learn the boards myself still. lol I dont even know how to quot multiple peolpe in my same thread lol Welcome to Ty's ptr!!!!

cantwaittoseemickey
01-08-2010, 09:00 PM
I hope you figure out what is going on with Ty's stomach.

As for DH's knee, I am not sure how he did with the first cortisone shots, but you might want to do it 3-4 days prior to your trip. When I had them in my knees, the pain from the shots was worse the second day after the shot until the shot took effect a few days later. I hope the surgery goes well.

I am also happy that you have awesome flight times! :grouphug:

My husband takes them like a pro. But he fools himself too sometimes lol. This time it hurt a little worse than last time. He get his last shot 3 days before we leave. I might call the dr and ask him for something for pain for him. THat would be a big help to make it tolerable t0 do all that walking.

kellyw8863
01-09-2010, 08:00 AM
I'm sorry you are dealing with so much right now.:hug: I hope that everyone is feeling better in time for your trip. Thinking of you guys!

cantwaittoseemickey
01-09-2010, 06:05 PM
Thank you Kelly:)

Oh the excitment is brewing (ok boiling over:rotfl2:) This week we can say ONE month till lift off!! :banana: I know it is going to get crunch time soon. The kids are marking off the days from their calendars. They are coming in really handy.

Now we need the stores to have some summer clothes come in soon so I can get dd a pair or two of shorts and a bathing suit.

Im forgoing the itinerary lol. It just seems its impossible to do it all in 5 days so we are just going to do whatever whenever. We will have fun either way. I will take a list of the parades and fireworks times with me. I really want to try to work something in for SeaWorld with Shamu. they didnt have the times for the shows just yet.

pnutallergymom
01-09-2010, 06:06 PM
Wow...you guys have so much going on right now. I hope things settle down for you soon. Just wanted you to know that I was thinking of you.:flower3:

cantwaittoseemickey
01-10-2010, 09:45 AM
Wow...you guys have so much going on right now. I hope things settle down for you soon. Just wanted you to know that I was thinking of you.:flower3:

Thank you :)He is feeling much better today:banana:Went to sleep alot easier and is very chipper this morning.

This week we will be starting our Disney Family Nights since it will be our one month to go mark:woohoo: Im not sure just yet what we will be doing but dh has already suggested a few movies. It will be alot of fun. I will be sure to take some pics:)

pipersmom
01-10-2010, 09:49 AM
I'm so glad that Ty is feeling better!! Woohoo for family movie night! Can't wait to see the pics! popcorn::

kellyw8863
01-10-2010, 09:54 AM
Thank you Kelly:)


Now we need the stores to have some summer clothes come in soon so I can get dd a pair or two of shorts and a bathing suit.



I don't know what style she likes, but I was just on Landsend.com yesterday, and they have some cute new suits, and they still have some summer stuff in their Overstocks section for dirt cheap. Good luck!

yinyanggirls
01-10-2010, 03:52 PM
No itinerary is pretty brave. :thumbsup2 Go for it! I know it will be fun. You've plenty of options to choose from and kids always love the pool.

maroo
01-11-2010, 01:23 PM
I am so glad Ty is feeling better!! :) :hug:

You are going to have a blast!!!

cantwaittoseemickey
01-11-2010, 01:51 PM
Thank you Maroo. Although I am not to optimistic right now. Fil was admitted last night with pnemonia in both lungs. He is in a lot of pain right now:(

But unoptimistically-optimistically speaking;)

We have our DFN movies picked out.

Thumper321
01-11-2010, 08:09 PM
I'm sorry to hear about your FIL. I hope that things settle down a little bit for you before your trip. Have fun with the DFN's!

cantwaittoseemickey
01-12-2010, 07:35 AM
I'm sorry to hear about your FIL. I hope that things settle down a little bit for you before your trip. Have fun with the DFN's!

Thank you. We are really looking forward to the DFN's. They can't wait to see what else we are doing while we watch the movies. Im keeping that a secrete(since Im not sure what Im doing yet :rotfl:)

cantwaittoseemickey
01-12-2010, 07:44 AM
I just love getting up in the morning with the kids and watching the Disney Channel. When Sierra gets up we watch Phenius and Ferb. We both sit and sing the intro:love:

Then when Ty gets up we watch Handy Manny first then the Disney Characters comes on. Tyler was :rotfl: this morning. He was standing there pacing in front of the tv. He was really into his show. :love: He really likes Pete. He comes in second as his favorite character of course Goofy is #1:thumbsup2

pipersmom
01-12-2010, 07:51 AM
I'm sorry to hear about your FIL :hug:. We'll keep your family in our thoughts and prayers.

The movie picks sound great, I've never heard of Snowballing either..will have to look it up. We were going to start our DFNs this weekend, but didn't because I wasn't leaving the house with her in the cold. So we've rescheduled! We'll either do our first one in the hospital..yuck! Or tomorrow night, hooray!

pnutallergymom
01-12-2010, 08:21 AM
I am so sorry to hear about your FIL....Sending you a :hug: and more prayers for him and your family.

cantwaittoseemickey
01-12-2010, 06:12 PM
The excitement is brewing:rotfl:Sierrra just came in the livingroom and asked if anyone was on the phone:confused3 dh and I said no at the same time. Sierra SCREAMS:scared1: at the top of her lungs then yells WERE GOING TO DISNEY:rotfl:

I guess when she heard me tell the teachers today at her school meeting (IEP time) she felt the "realness" lol.

cantwaittoseemickey
01-12-2010, 09:29 PM
Ok I have an idea I just dont know how to do it..Some things I would love to do to Ty's wheelchair. Sicne I have looked all day for some hand rim covers that are in mickey fabric I wonder if If they are makable?? Also I want to buy some of those little lights that go on bycicle tires to go on his spokes to his wheelchiar. I know this is the bad time of the season but maybe I could find some??? The wheelchair rim covers Im at a loss:(

pipersmom
01-12-2010, 10:02 PM
That's so cute that Sierra was so excited, Tonya! I'm going to pm you, re the rim covers. You could prob find the bicycle tire clips at Toys even at this time of year since they have such a big bike section...

MomTo4+more
01-12-2010, 10:06 PM
Just joining in.

There is a child at our hospital who has the cutest wheelchair covers. If I see her anytime soon, I will ask about them. I think someone makes them for her. Disney ones would be very fun for your trip!

So fun to hear that excitement is growing around your house!

cantwaittoseemickey
01-13-2010, 05:35 AM
That's so cute that Sierra was so excited, Tonya! I'm going to pm you, re the rim covers. You could prob find the bicycle tire clips at Toys even at this time of year since they have such a big bike section...


Thank you I will check that out! I am hoping to go out today to see what I can find. Havent been anywhere other then walmart in like 2 months lol kinda tired of that place!Time for some target or SOMETHING lol. Toys r us sounds good. I will have a look there.

cantwaittoseemickey
01-13-2010, 06:12 AM
Just joining in.

There is a child at our hospital who has the cutest wheelchair covers. If I see her anytime soon, I will ask about them. I think someone makes them for her. Disney ones would be very fun for your trip!

So fun to hear that excitement is growing around your house!

Thank for joining our ptr :) Thank you for talking to them if you see them out. I would appreciate that. Oh yes we are all soo counting down the days!

dmbfan
01-13-2010, 07:30 AM
We ironed on Micky Patches to Jake's pump bag...it was too cute...and he still has it on there as a matter of face...:rotfl:

Love the picture of the kids...can't wait to see more.:banana:

cantwaittoseemickey
01-13-2010, 07:42 AM
We ironed on Micky Patches to Jake's pump bag...it was too cute...and he still has it on there as a matter of face...:rotfl:

Love the picture of the kids...can't wait to see more.:banana:

Im slowly getting pictures on here. Im bad about uploading. Takes me forever! I still have New years pics I am going to post. But I assure you I will not be that way with my TR. lol There will be oodles and oodles of pics!! And Im alwasy busy reading everyone elses ptr and tr:rotfl2:

Christine I was just thinking about this last night! I was reading your ptr(kinda funny I read the tr before the ptr:rotfl:) . Ty has a Wall E patch for his pump backpack that I hadnt put on yet. I had looked for a Mickey Patch and never found one.

maroo
01-13-2010, 09:25 AM
Ok I have an idea I just dont know how to do it..Some things I would love to do to Ty's wheelchair. Sicne I have looked all day for some hand rim covers that are in mickey fabric I wonder if If they are makable?? Also I want to buy some of those little lights that go on bycicle tires to go on his spokes to his wheelchiar. I know this is the bad time of the season but maybe I could find some??? The wheelchair rim covers Im at a loss:(

If you aren't able to find stuff before you go...they may have some light up things at Disney that you can dress the chair up with. :)

I saw a lady that purchased some round light up toys and put them intertwined through her spokes - it was super cool to watch her wheels go!

I will be praying for you guys. It sounds like your FIL is really sick. :(

cantwaittoseemickey
01-13-2010, 01:42 PM
If you aren't able to find stuff before you go...they may have some light up things at Disney that you can dress the chair up with. :)

I saw a lady that purchased some round light up toys and put them intertwined through her spokes - it was super cool to watch her wheels go!

I will be praying for you guys. It sounds like your FIL is really sick. :(

I will keep an eye out while we are thanks:) That is a very good idea! No luck at Target today but I will keep looking. I did get a few scrap booking things for his scrap book I am making. I will have to add a pic later tonight. I also bought Sierra a shorts/shirt bathing suit. I only had time to go to Target as I spent the day with my mom. We sat and drank some starbucks and talked alot lol.

cantwaittoseemickey
01-14-2010, 05:57 AM
Four weeks to go

:cheer2::yay::woohoo:

yinyanggirls
01-14-2010, 07:16 AM
There it is! One month until Ty's trip!

Thumper321
01-14-2010, 08:51 AM
:Pinkbounc :bounce: :Pinkbounc :bounce: :Pinkbounc :bounce:1 Month Left! Congrats on being in the homestretch! :Pinkbounc :bounce: :Pinkbounc :bounce: :Pinkbounc :bounce:

pnutallergymom
01-14-2010, 08:53 PM
:dance3:WOOOOO HOOOOOO:dance3:!!!! One Month To Go!!! That is sooooo exciting!!!!

pipersmom
01-15-2010, 08:03 AM
Woohoo for a month! :banana: party:: Before you know it, it'll be time for you guys to leave!

cantwaittoseemickey
01-15-2010, 10:34 PM
:cool1: Oh how I cant belive it! I am trying really hard not to give up hope that we will be able to go next month. But we just keep getting bad news by the day. We just got word today that it has spread to his bones. His back to be exact. So that is his brain lungs and bones. I am just so hurting for my dh. I can't go into everything here but things are extremely hard right now. I may be off the forums some but I am trying to spread myself over dh his dad my family and the kids. And we also found out today that dh's grandpa has to go to an oncologist b/c of low blood count. Our hearts are so heavy right now and there is alot of hurt also going on that I wont get into as far as all of this goes. It's just so overwhelming right now.

And if you could please say a little prayer for Ty for Tuesday he will be going to the ped as he has a cyst like thing on his jaw line. At first we thought it was a lymphnode but this thing rolls when we push on it and it is bothering him.

As far as the kids go we are not busting their hope. So we had our WALL EEEE DFN and sat and watched it with my parents. It was a nice quiet evening as I just cannot do the arts and crafts and different things I wanted to do with everything going on. Here are some pics from tonight:

cantwaittoseemickey
01-15-2010, 10:41 PM
I had some new years pics up but Im trying to find some better ones lol!

pipersmom
01-16-2010, 07:49 AM
I'm so sorry to hear about your FIL, Tonya. :hug: We'll be thinking about your family. Don't worry about the boards when you obviously have more important things going on, you need to take care of your loved ones. Also hoping it is just something minor going on with Ty. :hug: You have your hands full!

SueM in MN
01-16-2010, 04:47 PM
Ok I have an idea I just dont know how to do it..Some things I would love to do to Ty's wheelchair. Sicne I have looked all day for some hand rim covers that are in mickey fabric I wonder if If they are makable?? Also I want to buy some of those little lights that go on bycicle tires to go on his spokes to his wheelchiar. I know this is the bad time of the season but maybe I could find some??? The wheelchair rim covers Im at a loss:(
Not Disney, but cute anyway and you can put them wherever you want on the wheelchair:
www.shrinkins.com

Also, I have seen the lights at Target too in their bike area. That usually has that sort of stuff soon.

kdzbear
01-16-2010, 04:54 PM
Ok I have an idea I just dont know how to do it..Some things I would love to do to Ty's wheelchair. Sicne I have looked all day for some hand rim covers that are in mickey fabric I wonder if If they are makable?? Also I want to buy some of those little lights that go on bycicle tires to go on his spokes to his wheelchiar. I know this is the bad time of the season but maybe I could find some??? The wheelchair rim covers Im at a loss:(

Ok, I have an idea, but can you sew? You cold take a long strip of fabric (think double or triple yard stick length) and with the raw edges tucked in sew velcro to each side. One side would have the soft velcro and the other side would have the rough velcro to seal it. It would look like a long tube when the velcro came together on each side. Then you could just wrap it around the hand rims and it would bunch up as the velcro came together. Does this make any sense? I think that they would be fairly easy to make as long as you kept them straight and rectangular until you apply them to the chair. This way they would be removable and washable too!:wizard:

dmbfan
01-16-2010, 08:30 PM
OMG are so getting excitied..Less than a month from now....:thumbsup2:thumbsup2:cool1::cool1:

cantwaittoseemickey
01-16-2010, 08:58 PM
I'm so sorry to hear about your FIL, Tonya. :hug: We'll be thinking about your family. Don't worry about the boards when you obviously have more important things going on, you need to take care of your loved ones. Also hoping it is just something minor going on with Ty. :hug: You have your hands full!

Thank you. Just a little overwhelming right now. This is the place I want to be . planning our trip and just being excited to go But I belive God might have other planse for us. But maybe not. We are sure going to keep on like i
its tomarrow!!!

yinyanggirls
01-16-2010, 09:27 PM
Thanks for sharing the pics! It's so fun to see all our Wish families. My youngest LOVES Wall-E. We will have to do that one time but I have no ideas for crafts or food. Sometimes just being together is the best you can do. I hope the next few weeks get easier on you guys. If not, you will probably need the trip more than ever!

cantwaittoseemickey
01-16-2010, 09:35 PM
Oh you are so right. We need it so bad right now. I wish we could move it up somehow. That would even be better. But probaby not. But we are still excited and are planning away. Actually these next few weeks I am going to redo my livingrooms and cleen clean them then get alot of other things done too. Then the next week I will be focusing more on packing and things like that. I need to clear my mind a bit:) We still have Tinkerbell this Frday and we will probably do it at my moms house and may invite Sierra's friend with her. Ty has no friends like she does. Maybe one day:) Anyways I will go out and buy Tinkerbell things this week:)

dmbfan
01-16-2010, 09:39 PM
Oh you are so right. We need it so bad right now. I wish we could move it up somehow. That would even be better. But probaby not. But we are still excited and are planning away.

Oh no you do not want to wish it to be right now, cause it is over before you know it...:guilty: Enjoy this time whie you have it....You really will have the most AMAZING trip of your life when it comes to MAW and Disney...:grouphug:

maroo
01-16-2010, 09:44 PM
I am so sorry about everything going on right now. Huge hugs and prayers to you guys!

hang in there!

and keep us posted! we will keep praying!

cantwaittoseemickey
01-16-2010, 10:13 PM
Thank you all. I am so greatful for you all. What a blessing we have here. The WISH family. Ahhh that is so neat.

Christine the only reason I want it moved up is because I know we would get to go then ;) We just arnent sure how much longer dh's dad is going to make it. Dh has been going up alot to see him. I am so proud of him. I love him so much. And to know what a good daddy my kids has makes this even more special. Everything cant be perfect the way it could be. But you know what it will be our little perfect. Maybe a lot of sitting. Maybe alot of water rides for his knee. Maybe a short trip and need to come home we dont know that yet. Maybe a trip that needs to be reschdulded. But you know what? It is a trip that will be eventually that we were blessed enough to recieve because of Ty and all the things he has gone through in his little life. He is the reason for this trip. We want him to have a magical time. Oh I wish I would have taken a pic of his eyes lighting up at Wall ee. He loves that little guy!

Hugs to all
Tonya

Thumper321
01-17-2010, 06:50 PM
I am so sorry to hear everything you are going through! :hug:

I actually came over here to post the information below. I posted it on the Wish Trippers thread, but I didn't know if you would see it. I hope that it's not out of line for me to post it here. I didn't realize how bad things are. Your family will continue to be in my thoughts.

Here's the info. Disregard it if you don't need it.

Just wanted to let you know that I found a little more supportive info. from the TSA website. It says specifically:

"The limit of one carry-on and one personal item (purse briefcase or computer case) does not apply to medical supplies, equipment, mobility aids, and/or assistive devices carried by and/or used by a person with a disability."

This is the page I will be printing to take to the airport for Aidan's supplies. Hope I'm not on major overkill here. I just wanted to share what I found and hope that it might help you as well.

Here's the TSA link: http://www.tsa.gov/travelers/airtravel/specialneeds/before_you_go.shtm and it's the third one down.

cantwaittoseemickey
01-17-2010, 08:00 PM
I am so sorry to hear everything you are going through! :hug:

I actually came over here to post the information below. I posted it on the Wish Trippers thread, but I didn't know if you would see it. I hope that it's not out of line for me to post it here. I didn't realize how bad things are. Your family will continue to be in my thoughts.

Here's the info. Disregard it if you don't need it.

Thank you! No you are absolutely fine to post please do!! I am still holding out hope for our trip and am continuing to pack and everything. I will definately print that out. I had to get some more ink for the printer so I hadnt bothered calling them back or looking anything up again but I got it today so I will definately print that out. Thank you!

We talk about our trip each and every day in some way or another. Tonight we chose our rides that are must do's! We just keep dreaming about this trip and what a great time we are going to have.

kellyw8863
01-18-2010, 09:56 AM
Thinking of you guys and holding out hope that everything will happen as planned.:hug:

maroo
01-18-2010, 11:53 AM
Just wanted to stop by and check on you guys.

I am praying for you guys!
Hope everything is getting better for you guys.

Thumper321
01-18-2010, 10:37 PM
Just wanted to let you know we're still thinking about you. :hug:

cantwaittoseemickey
01-19-2010, 05:13 PM
Thank you for thinking of us:love: It has been an emotional roller coaster the last few days but we are hanging in there;) My poor dog was sick but thankfully we were able to avoid the vet on a weekend he has some meds and is on the mend now. Dh's dad they have increased his oxygen up to 4liters and were doing a ultrasound and needle biopsy of his lungs today as he has fluid on them. I called my mom today and just bawled my eyes out and I feel like a huge weight has been lifted although I know it will fill up more.

Then Ty had his ped apt and I took Sierra too as she decided her hip didnt need to be in socket a few times this weekend:eek: Turns out she has scoliosis so she will have a xray on her spine and hip tomarrow and he is referring her to a orthopedist.

Ty's knots were just enlarged lympnodes thank goodness. But he has lost more wieght. So the ped is calling his nutrionist and asking to change it to something that can help with the never ending constipation and help him gain weight. This will be his third formula change.

This Friday is Tinker Bell night :banana: (geez I love that little bannaner guy:laughing:) Although dh tried to get his Snowball express in there instead. Nope that's next week lol.

maroo
01-19-2010, 10:54 PM
I am so sorry that you guys are having such a hard time.

Was the scoliosis severe? Or just a bit bad and thus the referral?

cantwaittoseemickey
01-20-2010, 05:00 AM
I am so sorry that you guys are having such a hard time.

Was the scoliosis severe? Or just a bit bad and thus the referral?

I don't think it is severe but she will be having her xrays later today. I believe the referal is mainly because of the hip pain she is having and the fact it keeps popping in and out so he wants to see if it is from the scoliosis.

yinyanggirls
01-20-2010, 07:36 AM
When it rains, it pours huh? I'm sorry you guys are going through so much right now!!

cantwaittoseemickey
01-20-2010, 07:43 AM
Thank you Melissa. Im feeling better since my big bawl out cry yesterday. ;) But talking about Disney is totally THE best medicine!! lol Dh is starting to talk more about it too like how we are going to handle some things. The thought of my mil going down with us came in our heads for just a minute. But that was that lol. We want to enjoy the trip not get more stressed:rotfl2: But it would be nice if someone went with us.

maroo
01-20-2010, 09:09 AM
I don't think it is severe but she will be having her xrays later today. I believe the referal is mainly because of the hip pain she is having and the fact it keeps popping in and out so he wants to see if it is from the scoliosis.

Let us know how she does! :)

:hug:

Thumper321
01-20-2010, 09:47 AM
Thank you Melissa. Im feeling better since my big bawl out cry yesterday. ;) But talking about Disney is totally THE best medicine!! lol Dh is starting to talk more about it too like how we are going to handle some things. The thought of my mil going down with us came in our heads for just a minute. But that was that lol. We want to enjoy the trip not get more stressed:rotfl2: But it would be nice if someone went with us.

Wow, Tonya. You've just got so much going on. Although, I have to agree that Disney is indeed the best medicine. Hang in there! Hopefully things will start to move the right direction soon.

pacrosby
01-21-2010, 02:30 AM
I've been away for awhile so just coming back and trying to check in on everyone's progress. Sorry to hear of all the continued complications. Good thoughts coming your way:hug:


Pamela:santa:

Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

cantwaittoseemickey
01-21-2010, 06:54 PM
Thank you for checking on us:) I am skimpish on here right now myself.

We are hanging in there. Just taking things day by day.Things are pretty hard right now.

maroo
01-22-2010, 12:50 PM
Oh, I am so sorry.

Bless your heart. :hug:

We are here and praying for you guys.

pnutallergymom
01-23-2010, 07:15 PM
Just wanted to check in and see how you guys were doing?? I'm hoping ok.

Miss seeing you on here. Hang in there!! :hug:

cantwaittoseemickey
01-23-2010, 10:08 PM
I have Wish news:cool1: But for now a little about us. Sierra's xray did indeed show scoliosis but the good news is it is only a 5degree curve but she will go to the ortho on Tuesday so we will learn more then. Me and my hubby went to see his dad yesterday and it was a really good visit. We stayed for a while. He seemed to be doing ok. It is reassuring seeing him because not knowing for yourself makes it kind of hard. Where dh has been going up my mom watched the kids and me and dh got to go out to eat and go see him. It was really nice. The dog is alot better thankfully.

We have Tylers formula straighted out and he will now be starting on Boost kid essentials 1.5 but we have to give him quite a bit of water in there too. So a new formula new schedule right before we leave. Hopefully he tolerates it well.

After we went to see dh's dad we came back to my parents and watched Snow Ballen. WOW NOW I remember that show lol. from like the 70's???? Sierra lost out on Tinkerbell b/c she wouldnt put the ds down so Daddy won. Hers will be next week lol. The kids got an extra treat and we all went out to see "The Toothfairy" at the movies today. I thought it was a really good movie! My mom got to see one of her best friends there today who happened to be watching the same movies. She hasnt seen her in years and has often thought about her so that was great they got to exchange phone numbers.

Ok now to WISH NEWS:banana: I got up this morning and opened my email and low and behold an email from our wish granters was there. Wanting to plan our get together. So we get our itinerary on the 6th :banana::woohoo::yay:.

Then I went out to the mailbox and this is what came in the mail!

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersGivekidstheWorldPacket004-1.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersGivekidstheWorldPacket009-2.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersGivekidstheWorldPacket011-1.jpg

cantwaittoseemickey
01-23-2010, 10:11 PM
Just wanted to check in and see how you guys were doing?? I'm hoping ok.

Miss seeing you on here. Hang in there!! :hug:

Oh I miss seeing you on here too!!! I have so much to do! lol I have been lagging and no time to lag! lol . I have packing to do , dr apts to attend and a house to clean so my hubby can get through it when he has his surgery:rotfl: I wil be on here in the next few weeks I promise! Just trying to get ready for this trip and seeing fil and clean dr apts lol. Its coming up on me fast now. No time to lose lol!

yinyanggirls
01-23-2010, 10:33 PM
Isn't it fun to get Trip mail? I'm glad to hear you had a good visit with FIL. Sounds like a good weekend overall.

cantwaittoseemickey
01-24-2010, 05:53 AM
Isn't it fun to get Trip mail? I'm glad to hear you had a good visit with FIL. Sounds like a good weekend overall.

It sure does. It makes it feel so "real" lol. dh even said he is getting butterflies now lol. It definately was a great weekend. And fil came home yesterday too. So dh will go see him today and I will be getting some cleaning done.:thumbsup2

cantwaittoseemickey
01-25-2010, 05:16 PM
Oh it's getting so exciting around here:banana: I heard from the Wish granter again last night and we talked more about Ty's send off party. I should know what we are doing in a few days!! I can't belive it is coming up so quickly now. I have SOOO much to do lol and here I sit on the computer:rotfl:

Ok so I contacted Sea World too:) lol We are meeting SHAMU!!!!!!:cool1::scared1: After we see Believe we will get a meet and greet with Shamu OMG I cannot wait to tell Ty!! He is going to absolutely LOVE IT! I am coming up with a plan to surprise him. I think we will let him know at the Send off party. Or if I can hold it longer will just wait till we get to Sea World lol IF I can. And dh said he can't promise he will hold it in either lol!

Thank you Christine on the info regarding the t-shirts. I am suprised they didnt at least give Jake one:confused3 I did ask our Wish Granter last night if she could get Sierra one and she said she would.

Now I need to get busy. Time is creeping up on me:eek:

dmbfan
01-25-2010, 06:15 PM
Ohh so exciting about Sea World....it will be magically for sure. If it was me, I would wait and tell him when you get there...:cool1:

Glad that both kids will get their MAW shirts...just make sure you get the buttons too...they are a huge help with all the nasty stares you CAN get when you get special attention...from rides, to perferred seating, dancing in parades...it just make every realize that this is your child's special wish...if you know what I mean.:flower3:

Momofwishkid
01-25-2010, 08:50 PM
:yay: Im so glad yu got a meet and greet with Shamu! Cant wait to hear all about it and the send off party!

pnutallergymom
01-25-2010, 09:16 PM
Hi Tonya!!!

Thanks fo checking in on Brigge. We are doing well....happy to be home!!

I LOVE the new pics!! Adorable!!

Wanted to let you know that Brigitte is on Boost K.E 1.5 as well...has been a real lifesaver for us!! Hope it works as well for you guys.

Awesome news on Shamu!!!! I agree with Christine, keep it a surprise if you can!! That would be amazing!!

cantwaittoseemickey
01-25-2010, 09:56 PM
Ohh so exciting about Sea World....it will be magically for sure. If it was me, I would wait and tell him when you get there...:cool1:

Glad that both kids will get their MAW shirts...just make sure you get the buttons too...they are a huge help with all the nasty stares you CAN get when you get special attention...from rides, to perferred seating, dancing in parades...it just make every realize that this is your child's special wish...if you know what I mean.:flower3:


Ok a couple of questions with this. Does the kids where the t-shirts/buttons to every park Or just to every Disney Park?

Also I know we get the Gac from GKTW but is that only for the Disney parks or is that also for Sea World, US/IOA?

Will we need to get others from those parks themselves that arent apart of Disney? How do the non disney parks treat Wish Kids? Do we need to wear the buttons.?

Momofwishkid
01-25-2010, 10:08 PM
Ok a couple of questions with this. Does the kids where the t-shirts/buttons to every park Or just to every Disney Park?

Also I know we get the Gac from GKTW but is that only for the Disney parks or is that also for Sea World, US/IOA?

Will we need to get others from those parks themselves that arent apart of Disney? How do the non disney parks treat Wish Kids? Do we need to wear the buttons.?

Im sure someone who has already been will answer this but i just wanted to say I have heard US treats Wish families the best of all the parks. I beleive the GAC is only for Disney parks?? but the GKTW button is for all?? Again Im not positive on this.

cantwaittoseemickey
01-25-2010, 10:08 PM
Hi Tonya!!!

Thanks fo checking in on Brigge. We are doing well....happy to be home!!

I LOVE the new pics!! Adorable!!

Wanted to let you know that Brigitte is on Boost K.E 1.5 as well...has been a real lifesaver for us!! Hope it works as well for you guys.

Awesome news on Shamu!!!! I agree with Christine, keep it a surprise if you can!! That would be amazing!!


Oh good! Someone else on Boost K.E 1.5 I just really hope its easier on the stomache. We will be adding water to it also once we get on it full force right now we are working up to full strength.

I think Im going to have my mom draw Shamu on pieces of cardboard and fold them in half like a card with Shamu on half and the words "Welcome to Sea World. "Are YOU ready to meet SHAMU UPFRONT AND PERSONAL???? Well here is YOURRR chance!!

yinyanggirls
01-25-2010, 11:41 PM
Shamu! Hurray! That will be fun! I'm excited to hear about all these Sea World adventures when everyone gets back. You'd BETTER write a TR. :goodvibes

cantwaittoseemickey
01-26-2010, 08:27 AM
Shamu! Hurray! That will be fun! I'm excited to hear about all these Sea World adventures when everyone gets back. You'd BETTER write a TR. :goodvibes


lol I am definately doing a trip report:);)

Thumper321
01-26-2010, 09:53 AM
lol I am definately doing a trip report:);)

That's so exciting about Shamu! What welcome news with all that you've been going through! It sounds like the past few days might have been better for you though! I'm glad that you got to see FIL with your own eyes. It's always so hard to go off of what others are telling you. Congrats on the GKTW mail! And I hope that Sierra's appointment goes well today. I'll be watching for an update! :hug:

dmbfan
01-26-2010, 01:06 PM
Ok a couple of questions with this. Does the kids where the t-shirts/buttons to every park Or just to every Disney Park?

Also I know we get the Gac from GKTW but is that only for the Disney parks or is that also for Sea World, US/IOA?

Will we need to get others from those parks themselves that arent apart of Disney? How do the non disney parks treat Wish Kids? Do we need to wear the buttons.?

Jake wore his MAW shirt the day we left. Than we all wore our MAW blue buttons all the time, and Jake, myself and husband would wear the GKTW button daily as well. Or hang it to lanyard they give you. You get a GAC pass for WDW, Epcot, HS and AK, and US/IA give you an gold VIP pass.

We did not stay very long at Seaworld as we went to the Red Sox game, but we found SW was not as "good" as the other parks. Most of the other parks we were able to sit in the front of roller coasters and other rides, at SW they almost rolled their eyes to us when we walked up the exit ramp and than asked if we could get the front row, we were straight out told NO.

Maybe it was just the day, or the old man doing the ride.
Hope that helps.:thumbsup2

pnutallergymom
01-26-2010, 01:12 PM
Oh good! Someone else on Boost K.E 1.5 I just really hope its easier on the stomache. We will be adding water to it also once we get on it full force right now we are working up to full strength.

I think Im going to have my mom draw Shamu on pieces of cardboard and fold them in half like a card with Shamu on half and the words "Welcome to Sea World. "Are YOU ready to meet SHAMU UPFRONT AND PERSONAL???? Well here is YOURRR chance!!

That is a great idea!!! Make sure you take pictures!! :cool1:

We have to add pedialyte to Brigitte's feeds too...we have been able to taper off a bit, since she gets IV hydration and doesn't need that much more fluid. I'm sure as the warmer weather hits, she will need more fluids!! I hope it works for you. I actually got Brigitte to drink a bit of it out of the straw yesterday!! Its not to bad!! I tried it too!! Although, I'm a chocolate girl at heart!!! :)

cantwaittoseemickey
01-26-2010, 01:56 PM
Jake wore his MAW shirt the day we left. Than we all wore our MAW blue buttons all the time, and Jake, myself and husband would wear the GKTW button daily as well. Or hang it to lanyard they give you. You get a GAC pass for WDW, Epcot, HS and AK, and US/IA give you an gold VIP pass.

We did not stay very long at Seaworld as we went to the Red Sox game, but we found SW was not as "good" as the other parks. Most of the other parks we were able to sit in the front of roller coasters and other rides, at SW they almost rolled their eyes to us when we walked up the exit ramp and than asked if we could get the front row, we were straight out told NO.

Maybe it was just the day, or the old man doing the ride.
Hope that helps.:thumbsup2

Oh this helps alot Christine. Im thinking we may end up in some big lines at SW then. I didnt want to seem to "flaunt the button" lol if SW didnt recognise it:rotfl2: I could picture the looks lol

Im debating on just having the kids wear jammies there lol. Since we have to leave so early. lol But I might not be able to pry his shirt away from him;)

cantwaittoseemickey
01-26-2010, 02:00 PM
That is a great idea!!! Make sure you take pictures!! :cool1:

We have to add pedialyte to Brigitte's feeds too...we have been able to taper off a bit, since she gets IV hydration and doesn't need that much more fluid. I'm sure as the warmer weather hits, she will need more fluids!! I hope it works for you. I actually got Brigitte to drink a bit of it out of the straw yesterday!! Its not to bad!! I tried it too!! Although, I'm a chocolate girl at heart!!! :)

Dh tried it cause he thought he could get Ty to drink it. I can't get past the smell;) He did say it wasnt too bad. Ty said no way. It is a little thick for him though too so I dont really see him drinking it.

Can you add the pedialyte right too the formula? I know I could with the pediasure but when he was on isosource it kind of clabbered it up.

I will definately take pictures. I have been deemed the "photographer" for this since I don't touch fish. Although I did say I would pet "something" lol

kellyw8863
01-26-2010, 06:59 PM
That's awesome about SW! I can't wait to read about it when you return!

Ali was given samples of Boost KE 1.5, and can't tolerate it, so we're back to the Nutren Jr. I hope it works out for you!

pnutallergymom
01-27-2010, 12:38 PM
Yes, Tonya, you can definitely add pedialyte to the formula...although it will affect the calorie count unless you are able to infuse the whole thing. Brigitte is stuck at 35/hr and has been since she got her Gtube.....dang motility!!! So instead of it taking 12 hours, we usually have to run it for 16. All depends on what Ty can tolerate!!

Its funny how some things work for some and not others.....I literally have every formula known to man in my basement.....and a year ago Brigitte couldn't tolerate this, we were stuck on Peptamen w/prebio for a bit but can't use that because of the probiotics and her line now...so she was forced into something else. It was a difficult switch, but she tolerates it now. She still doesn't gain weight, but who knows.....its going somewhere!!!

cantwaittoseemickey
01-27-2010, 12:49 PM
Kelly, We are hoping he will tolerat this. But we have a back up plan in case. If he doesnt we will try Jevity 1.2 since it is kind of "in between" the isosource and Boost. We are starting out slowly to see if he will tolerate it.

Oh yes I understand when it comes to all the switching and having left over. Our new hhc only sends me out a few cases though until we know he will tolerate it. That has helped not to have an overload. When he went to bed last night his tummy was so distended. I dont think it is the formula though as we are still working up to full strength.

cantwaittoseemickey
01-27-2010, 12:50 PM
lol Ty is too funny. He is a day ahead on his calender. Every time he goes to mark it off he has a little smirk on his face:rotfl:

cantwaittoseemickey
01-28-2010, 01:30 PM
Christine I think we will be able to see you and Jake that Wednsday. That is our day to go to Sea World and US and they are not open past 7pm i think. It might be a little later but we should make it:banana:

Ok I know someone else was going to be there when we are there but I can't remember who. I need to start from the beginning of my ptr and see who it is lol. Maybe we could meet up too!

I have another itinerary completed:banana: I will post it maybe tonight or tomarrow if I get a chance.

dmbfan
01-28-2010, 01:47 PM
Christine I think we will be able to see you and Jake that Wednsday. That is our day to go to Sea World and US and they are not open past 7pm i think. It might be a little later but we should make it:banana:

We will be there from 5-9pm at the castle....:wizard:

cantwaittoseemickey
01-28-2010, 10:21 PM
We will be there from 5-9pm at the castle....:wizard:

:thumbsup2 It's getting clooossserrr!!!!:lovestruc:dumbo::mickeyjum

cantwaittoseemickey
01-28-2010, 10:31 PM
I just had to sneak a little bit about my hubby in here. He has been going to see his dad (he is back in the hospital) every single chance he gets. Tonight he came home from work and completely shaved his head!! I mean it is shiney!! He did it to look like his dad:love: I love my hubby!

Ty had a really hard day today with swallowing:( He does most days but some days this stuff just gets so thick he doesnt know what to do with it. (sorry tmi). Those days where you wish the suction machine as a little more portable as we were not home at the time.

He had ot today. The therapist has changed from having him to do cursive but now starting over doing printing. She was a little taken aback by his printing so now we are starting all over with printing. She is going to try to find out the root of the cause of it taking him so long. If it is visual, processing or both. We know he has processing difficulties. And she could tell it too as it was taking him a long time to get out his thoughts. Although Im thinking I really need to get that veeg scheduled. Im going to do it tomarrow I think. We need to see why his pupils are staying so large. I have a few ideas of how to try to keep him sitting up straight since the therapists say this is affecting his swallowing, learning, endurance and all that and I will run it by them next week.

Sierra's orthoped apt was cancelled due to snow and Ty having a two hour delay so I got it rescheduled for Tuesday. Not too long. Just as long as its before the trip cause I need to know what to do for pain wise with her while we are walking those million miles! It will go fine once we have it all figured out:).

pacrosby
01-28-2010, 11:58 PM
Your dh is a wonderful son. That brought tears to my eyes. He deserves a hug.:hug:



Pamela
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids and a Gingerbread Man" http://www.disboards.com/showthread.php?t=2356739

cantwaittoseemickey
01-29-2010, 12:29 PM
Your dh is a wonderful son. That brought tears to my eyes. He deserves a hug.:hug:



Pamela
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids and a Gingerbread Man" http://www.disboards.com/showthread.php?t=2356739

Thank you:)

cantwaittoseemickey
01-29-2010, 04:04 PM
I did some shopping this morning. I bought Ty a pair of spongebob pajama's that have the shorts and pants to it, me some much needed Dr. Scholl's shoe inserts, Ty some lights for his wheelchair and Sierra 2 shirts and a pair of shorts. Dh is all set so he didnt get anything:).

Here is a pic of the lights I found. I bought them at Meijer in case anyone would like to find some. I found them on a side rack where they keep the door knobs and those hooks you can stick anywhere.So I guess that would be hardware?:confused3

http://i74.photobucket.com/albums/i267/snickerb/006.jpg

and a video of one of them in action
http://i74.photobucket.com/albums/i267/snickerb/th_003.jpg (http://s74.photobucket.com/albums/i267/snickerb/?action=view&current=003.flv)

dmbfan
01-29-2010, 04:55 PM
very cool lights on the wheels....sounds like you are all set and ready to go...:cool1::cool1::cool1::

cantwaittoseemickey
01-29-2010, 05:07 PM
Yep we sure are! How about you? Have you started packing?

cantwaittoseemickey
01-29-2010, 05:26 PM
Dh is with his dad right now. He isnt doing well at all. Hospice is in they are keeping him very sedated. He does not feel he will come back home. I hate to be a downer on here but I am so sad. With every good post I make it seems it is followed by bad news:( I know we will get through this but it is so hard. Im going to miss him:(

Momofwishkid
01-29-2010, 06:12 PM
Tonya, Im very sorry that your family is going through such a tough time. You will all be in my thoughts.

Those are very cool lights for Ty's wheel's! He is going to be so cool at Disney!

dmbfan
01-29-2010, 06:16 PM
Yep we sure are! How about you? Have you started packing?

:rotfl2: ughhh nope...still have to go thru all the kids summer clothes and see what they have and need...just been so busy during the day, that at night I can barely move...but I will get on it....:cheer2:

cantwaittoseemickey
01-29-2010, 10:27 PM
:rotfl2: ughhh nope...still have to go thru all the kids summer clothes and see what they have and need...just been so busy during the day, that at night I can barely move...but I will get on it....:cheer2:

Ooohh Girl you better get started:rotfl2: Its going to creep up on you!!!

cantwaittoseemickey
01-29-2010, 10:33 PM
ok well Im betting we are going to have to postpone our Wish Trip:( And unfortunately our dates would be in July. So if we have to postpone can I still keep this thread going instead of starting another one? Oh how I do not want to go in hot July. But knowing some things I know now(wish lounges) and such I dont think it would be as big of a problem for him as a regular vacation would be. Im going to wait it out as long as possible though.Our send off party is next Saturday so we will see how this week goes.

Ty's belly is really distended and he is having pain above his bladder. Not sure if it is bladder pain or probably constipation. I wish we knew what was going with his motility but no one seems to want to do any testing on him. They say oh yeah he has slow motility testing wouldnt tell us much arg! yes it would!!

dmbfan
01-30-2010, 08:24 AM
ok well Im betting we are going to have to postpone our Wish Trip:( And unfortunately our dates would be in July. So if we have to postpone can I still keep this thread going instead of starting another one? Oh how I do not want to go in hot July. But knowing some things I know now(wish lounges) and such I dont think it would be as big of a problem for him as a regular vacation would be. Im going to wait it out as long as possible though.Our send off party is next Saturday so we will see how this week goes.

Ty's belly is really distended and he is having pain above his bladder. Not sure if it is bladder pain or probably constipation. I wish we knew what was going with his motility but no one seems to want to do any testing on him. They say oh yeah he has slow motility testing wouldnt tell us much arg! yes it would!!

Oh no....really? Because of Ty or your FIL? If you have to change it, I highly suggest not going in July if heat is an issue. It is very hot and humid...it woul be awful. I hear Sept is a wonderful time, and more so, Nov...just something to think about.

I hope you can still make your trip in a couple of weeks...keep us posted:hug:

cantwaittoseemickey
01-30-2010, 08:49 AM
It would be because of fil. If he passes away within these two weeks I am worried how dh would feel while we are in disney.If he doesnt and something happens while we are gone :( I just need to talk to him more. I tried last night and he just broke down totally on me so we just sat and cried.

The thing is with Ty is he will see the surgeons in March to discuss the next steps for his bladder. If current treatment is not working (gentimycin flushes and increased ditropan) then he may have to have the bladder augmentation surgery(where they go in and connect his bladder to his intestines) That surgery has a 3 month recovery time and probably longer before we could go to Disney because of all the jarring around on the rides. So that would leave us till next year. We really wanted to do it now due to the changes in care he will need if he has that surgery. So I thought if it need be I could maybe get them to hold off till after July but Dec(dh's other vacation) would be too long.

I really feel bad for Ty and Sierra. Everytime we plan something something happens either before we get there and we dont go or something happens while we are there. It took them a while to be able to excited about this trip and I am going to hate like heck to pull the rug out on them once again. I have very mixed emotions right now.

dmbfan
01-30-2010, 09:57 AM
ughh boy I am sorry...as hard as it would be, I too would not want to be at Disney if my dad was passing away. I am sure I would not enjoy it at all.

You ca always take your wish trip, but you can not get back if you are not around when a close family memember passes away...:sad1:

I will keep you in my thoughts and prayers...:grouphug:

cantwaittoseemickey
01-31-2010, 01:29 PM
ughh boy I am sorry...as hard as it would be, I too would not want to be at Disney if my dad was passing away. I am sure I would not enjoy it at all.

You ca always take your wish trip, but you can not get back if you are not around when a close family memember passes away...:sad1:

I will keep you in my thoughts and prayers...:grouphug:

Thank's Christine. We are just taking it day by day.

Momofwishkid
01-31-2010, 01:57 PM
Tonya, I just wanted to say Im so sorry your family is going through this. :hug:

cantwaittoseemickey
01-31-2010, 01:59 PM
Please feel free to leave any opinions or suggestions:)

Sunday-Arrival Day-GKTW all day

Monday-Magic Kindgom all day
3pm Dream Parade
8pm Wishes
9pm Spectro
(will be taking advantage of Wish Lounge;))

Tuesday-Morning Animal Kingdom
Evening-Epcot
Late Evening-GKTW Family fun night
4:45 Jammin Parade
(will take advantage of Wish Lounge)

Wednesday-Morning Sea World
Evening Universal Studios
12:30 Believe

Thursday-DHS
Evening GKTW Winter Wonderland

Friday-Universal Studios

Saturday-Depart Day horseback riding
Downtown Disney
7pmish depart

So is this do able? Am I forgetting something? I feel like I am forgetting something:confused3

I also just spoke with our Wish Granter! This Saturday we will meet to recieve our Itinerary and things. We are going to an indoor golf place:cool1: Ty LOVES mini golf!! shhhh!! Keeping it a secret till that day!! :eek: lol I know I can I know I can I know I can!:rotfl2:

cantwaittoseemickey
01-31-2010, 02:05 PM
Tonya, I just wanted to say Im so sorry your family is going through this. :hug:


Thank you. Yesterday and today have been better so far.

Momofwishkid
01-31-2010, 02:06 PM
Im so glad things are looking up. :cool1: mini golf is so fun. I cant wait to hear about it. Be sure to take pics. I think your plan looks pretty good. :thumbsup2

pnutallergymom
01-31-2010, 07:37 PM
Hi Tonya,

Just wanted to stop in and say hello. We are praying for your entire family.

I think your itinerary looks great. Keep us posted about your FIL.

Hugs :hug:

kellyw8863
01-31-2010, 08:05 PM
I think your itinerary looks great! I am so sorry for all that you and your family are going through right now. Losing a parent is never easy.:grouphug:

noahsketomom
02-01-2010, 12:52 PM
Hi Tonya,
Just wanted to let you know we're praying for your FIL, your DH, and your whole family!! I know it will be hard no matter what has to happen with your trip, but I hope you will have the rest and relaxation that you deserve. Hugs to you and yours. :hug:

Blessings,

cantwaittoseemickey
02-01-2010, 01:04 PM
Thank you:grouphug:

Thumper321
02-01-2010, 01:55 PM
It would be because of fil. If he passes away within these two weeks I am worried how dh would feel while we are in disney.If he doesnt and something happens while we are gone :( I just need to talk to him more. I tried last night and he just broke down totally on me so we just sat and cried.

The thing is with Ty is he will see the surgeons in March to discuss the next steps for his bladder. If current treatment is not working (gentimycin flushes and increased ditropan) then he may have to have the bladder augmentation surgery(where they go in and connect his bladder to his intestines) That surgery has a 3 month recovery time and probably longer before we could go to Disney because of all the jarring around on the rides. So that would leave us till next year. We really wanted to do it now due to the changes in care he will need if he has that surgery. So I thought if it need be I could maybe get them to hold off till after July but Dec(dh's other vacation) would be too long.

I really feel bad for Ty and Sierra. Everytime we plan something something happens either before we get there and we dont go or something happens while we are there. It took them a while to be able to excited about this trip and I am going to hate like heck to pull the rug out on them once again. I have very mixed emotions right now.

Somehow, I missed the last couple of updates until now. :confused3 I hope that you don't have to postpone the trip, but it does seem that your family has a lot going on right now. How is FIL doing now? Do you think Ty is going to have to have the bladder augmentation or do you think the current treatment is helping? Whatever happens, I hope that your trip gives you all the fun, magical getaway that you all need.

The itinerary looks great! Here's hoping that the next couple of weeks are better for all of you! :hug:

cantwaittoseemickey
02-01-2010, 02:54 PM
They transferred fil to the hospice center today. The last few days he has been ok. Dh is getting ready to go up and see him.

Right now I kind of think Ty will need the surgery from what we are seeing at home. But I hope not. That surgery scares me. We are doing gentimycin flushes and as soon as we tempt it he has a spasm and it pushes it right back out. So that means his pressure is really high which isnt good on his kidneys. We are seeing a "team" of drs in March so I am not sure what they will say. The urologist transfered Ty's care to them when they said it was likely he would need surgery. They make the decision verses one dr making it.

cantwaittoseemickey
02-01-2010, 10:22 PM
5 more days till we get our MAW pack!! :banana: The kids still don't know it:woohoo: I am soo excited!

Today I took the brand new iv pole OFF Ty's wheelchair. That thing was awful. I couldnt put my hand all the way on the handle and well no bags were going to fit between it and the handle either. So its going back;) No worries with that thing. So I also got crafty thinking and I have an insulated lunch bag that has a strap that is adjustable on it so I lifted up his seat and hooked it around each little thing that the seat snaps into and so now we have a hanging med bag for his cold meds and any formula that needs to be cold for a while. And the funny thing is it matches his wheelchair! Unless we decide to take his other one which is purple. That thing has been awful but as long as we dont have to fold it we are good to go. We just cannot get it to fold and unfold right. I was so happy to get his new one and not use the other one but it does have the stroller handle on it and I miss my stroller handle. It holds more bags and a thing on it for drinks and water:rotfl: His new one is very lightweight but not very sturdy and it has a sling back on it which we are finding out it is not good for him.

yinyanggirls
02-01-2010, 11:37 PM
Phoebe's chair is always the "holder" when we're out and about. Even when we go somewhere with extended family, there always ends up being 4 or 5 bags, cameras, purses, etc hanging from it. :lmao:

I'm sorry to hear that Ty might need the surgery. It is NEVER fun to think about that possibility.

VroomVroomLightning
02-02-2010, 07:02 AM
I have been following your TR and just realized you are from Ohio!! So I am de-lurking to say Hi :yay: from a fellow Ohioan!! I can't believe your Ty's trip is almost here! I have been keeping your family in my prayers and will continue to do so!

cantwaittoseemickey
02-02-2010, 10:32 AM
Phoebe's chair is always the "holder" when we're out and about. Even when we go somewhere with extended family, there always ends up being 4 or 5 bags, cameras, purses, etc hanging from it. :lmao:

I'm sorry to hear that Ty might need the surgery. It is NEVER fun to think about that possibility.

:rotfl2: Yep it sure does come in handy for the bags. I tried to get them to change the handles on the green chair but they told me they couldnt. arg. I love his green chair though it is so quick and easy. Especially for the stores and things. Just fold it up and go. I will have to take a pic of them side by side tonight.

cantwaittoseemickey
02-02-2010, 10:34 AM
I have been following your TR and just realized you are from Ohio!! So I am de-lurking to say Hi :yay: from a fellow Ohioan!! I can't believe your Ty's trip is almost here! I have been keeping your family in my prayers and will continue to do so!

Thank you for following:) Oohh Ohio yay! Thank you for praying for us we really appreciate it.

dmbfan
02-02-2010, 08:43 PM
Oh I am so glad to see that everything seems to be on for the trip. Still my heart goes out to your and dh for your FLI...:hug:

Can't wait to see pictures from his going away party...make sure you take TONS and of course share them here...:banana::banana::banana:

cantwaittoseemickey
02-02-2010, 09:57 PM
So far as good as it can be:) We are just hoping and praying. Yes it coming up soon!:cool1::banana: It's supposed to be Saturday but now it is supposed to snow so we might need to wait till Sunday but that's ok! WOW I cant belive how long it is!! I have so much to do. Finish packing, find Sierra a jacket, get the meds in order. WOW!! Check the weather and see if I need to repack. The kids are getting sooo excited! And so is dh! He told me he really needs this trip bless his heart! Not too long now!!

dmbfan
02-03-2010, 09:21 PM
We want pictures of his going away party....:thumbsup2:cool1::cool1::cool1:

cantwaittoseemickey
02-04-2010, 11:41 AM
Oh good grief:scared1:I dont think Saturday is going to happen lol. At least 8 inches of snow:eek: NOT NOW!! The biggest snowfall of the season on the one day we actually have plans. Oh well we will get it sometime before next Sunday :rotfl2: The kids don't know about Saturday so they will be just as happy playing in the snow;)I was able to keep my secret lol.

pacrosby
02-04-2010, 06:06 PM
I heard about that crazy snowfall you guys are in for. DC is supposed to be on tap for around 2 feet!!!!! I'm jealous. It's supposed to miss us.

I'm glad to hear everything is still in the works. Hope FIL is resting comfortably and dh is finding some peace in the all the heartache.

:hug:


Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

cantwaittoseemickey
02-05-2010, 08:43 PM
We want pictures of his going away party....:thumbsup2:cool1::cool1::cool1:

I will surely post them if we get to go. It's supposed to be tomarow night but we are taking it moment by moment with all of the snow:)

I also want to send some hugs to you all. I think you know what its about.

cantwaittoseemickey
02-05-2010, 08:45 PM
We want pictures of his going away party....:thumbsup2:cool1::cool1::cool1:

I heard about that crazy snowfall you guys are in for. DC is supposed to be on tap for around 2 feet!!!!! I'm jealous. It's supposed to miss us.

I'm glad to hear everything is still in the works. Hope FIL is resting comfortably and dh is finding some peace in the all the heartache.

:hug:


Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739


It is definately crazy! They have lowered it a few inches so that helps lol.

We are still taking it day by day. Up until we leave. The day before he will go spend time with his dad while I have everything ready.

The Lurker
02-06-2010, 08:39 AM
This is my first try at posting. I have been lurking for quite awhile. I am a year round Orlando resident and have been volunteering at GKTW for a couple of years. You mentioned in one of your earlier posts you were buying "summer" clothes. I hope you will get to wear them, however this year our weather has been anything but tropical. Though the afternoons can be warm, we have had a great deal of wind, rain and cold and cloudy. It is 62 right now and the prediction for tomorrow morning is 42. My suggestion is to plan on layering with sweaters, sweatshirts and jackets. Check out one of weather sites before you leave. Please pack up some good weather for us!!!!

cantwaittoseemickey
02-06-2010, 10:00 AM
Thank you The Lurker for the heads up. I have been watching the weather and it does look like we may need to pack a few more jeans and long sleeves.I will wait just a lil longer before my final packing. ;)

cantwaittoseemickey
02-06-2010, 09:56 PM
We made it to our Send off Party. WOW was it icy! But we did it. We had it in an indoor golfing place that was a bit loud dark and well a little bit for Ty. There was this frankin stine thing that kept coming to the end of his chain (not real) and clapping back. arg its just so hard to knwo when someone with sensory issues and Pervasive developemental is going to react to things one moment. Anyways we had a really good time! They had cake and pop there for us. We talked and did ouw MAW thing and recived the tshirts and buttons:cool1:All the flight info but I am a little confused.

We were supposed to have a direct flight there and back. The lady had already told me the times and evertything. Only come to find out we have a layover in Atlanta so its not straight through and none of the times match up either. So I am reallly miffed on that as I am not a great flyer at all. And with Tyler trying to get him from one place to anyother quickly and him start in one of his moods he is done. He will repead and repeat and repeat arg! So I will hope to talk to our coordinator on Monday to see if we can get it straitened out. Also they think they messed up our expense check so we will check into that. Im more scared about spending 4 hours in the sky rather than just 2 and we are there. I just dont know how we will do it. I am a chicken I admit that. I hate flying but this is for my buddy. I will do whatever for him. But if they can change it I would be a much happier mommy that has to deal with Ty when he beomes uneasy.

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersMAWPartyFeb2062010270.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersMAWPartyFeb2062010281.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/MakeAWishpartyFeb62010005.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/MakeAWishpartyFeb62010003.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/MakeAWishpartyFeb62010001.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersMAWPartyFeb2062010273.jpg

http://i74.photobucket.com/albums/i267/snickerb/Tylers%20Wish%20Trip%20to%20Disney%202010/TylersMAWPartyFeb2062010274.jpg

pacrosby
02-06-2010, 10:07 PM
Is that one of those 'Monster Golf' places? I think that's what they are called...............it looks very much like what I've seen px of (haven't been yet but there's one local). Looks like a lot of fun:)

Sorry about the flight mix-up. I'm not thrilled about flying either but then I remind myself how much more of a risk it is to drive my car everyday:rotfl2: Sorry...............that probably didn't help:laughing:

Hope they can straighten things out for you.

The countdown is on:yay:

Momofwishkid
02-06-2010, 10:29 PM
:cool1: Im so glad you guys were able to get to the send off party. It looks like fun. I am so with you on the sensory issues and the meltdowns they can bring on. This is a real fear for me and the flight. I hope you can get it all worked out. Not much time left now!

cantwaittoseemickey
02-07-2010, 03:49 AM
Is that one of those 'Monster Golf' places? I think that's what they are called...............it looks very much like what I've seen px of (haven't been yet but there's one local). Looks like a lot of fun:)

Sorry about the flight mix-up. I'm not thrilled about flying either but then I remind myself how much more of a risk it is to drive my car everyday:rotfl2: Sorry...............that probably didn't help:laughing:

Hope they can straighten things out for you.

The countdown is on:yay:

It is Monstor Golf! :thumbsup2We had a lot of fun. Ty loves mini golf.It was really neat too. If you ever go I suggest you all wear white as it shows up the best. He did ok till the frankenstine thing then he had at least one finger in the ear most of the rest of the time lol. Didnt think to bring his headphones to golf:laughing:

cantwaittoseemickey
02-07-2010, 03:59 AM
:cool1: Im so glad you guys were able to get to the send off party. It looks like fun. I am so with you on the sensory issues and the meltdowns they can bring on. This is a real fear for me and the flight. I hope you can get it all worked out. Not much time left now!

Ty is ok once he is on the plane its just getting on and off the plane and sitting there waiting. I just hear wheres the plane millions of times and have the "tude". If I expect it it makes it easier. If I stay calm he will stay calm. But he will just repeat until we get on the plane.Then we worry about me up IN the air:rotfl2: It will be fine. It will work out either way. Just took me off gaurd lol.

dmbfan
02-07-2010, 10:00 AM
We have a monster mini golf here too, Jake loves that place.

So glad he was able to make his going away party...did he have a blast with his friends?

One more week...:thumbsup2

cantwaittoseemickey
02-07-2010, 10:54 AM
We have a monster mini golf here too, Jake loves that place.

So glad he was able to make his going away party...did he have a blast with his friends?

One more week...:thumbsup2

It was just us 4 and the ladies and one of thier sons.Our MAW chapter doesnt do big parties and we are still working on him being "friends" as opposed to him observing what they are doing all the time;)

pnutallergymom
02-07-2010, 06:44 PM
Tonya, everything sounds great!! Monster Golf??? It looked so cool!! I don't know why I haven't heard of it.

I loved the pictures.

Hoping everything is straightened out on Monday with regards to your flights!! Keep us posted!!!

cantwaittoseemickey
02-08-2010, 02:31 PM
We made the very hard decision today to reschedule Ty's MAW trip.:sad1:Fil is too ill and we do not want to be away during this time. We want to spend as much time as we can with him right now. So I will be redoing his ticker for ..............


JULY!!!! :banana: I will do an all new PTR so please keep an eye out for it. I will link it from here for a while.

Momofwishkid
02-08-2010, 02:35 PM
Oh Tonya, Im so sorry you have to reschedule but it sounds like it was a good decision for your family. I hope Ty isn't to upset. I will continue to keep FIL in my thoughts.

pacrosby
02-08-2010, 09:48 PM
Hey Tonya...............sounds like the right decision. Had something happened while you were gone, right or wrong, you probably would have never forgiven yourself. Enjoy every precious minute with your FIL. Hugs to dh and........................

July's not that far away :) Just think, more time to plan!

Thumper321
02-08-2010, 10:44 PM
Awww, Tonya :grouphug: I am so sorry to hear that you have to reschedule. :sad1: But you have had so much going on lately, and with FIL's health so critical right now, I think you made the right decision. But you already know that. I'll be waiting for your July PTR. :hug: :grouphug: :hug: :grouphug:

cantwaittoseemickey
02-09-2010, 09:30 AM
Oh Tonya, Im so sorry you have to reschedule but it sounds like it was a good decision for your family. I hope Ty isn't to upset. I will continue to keep FIL in my thoughts.

Thank you for your thoughts we really appriciate that. If feels like a huge weight was lifted off our shoulders. Ty was a little miffed at first but he was fine shortly after. We talked about making the links and doing lots of planning in the coming months. We talked about the positives.We will need to make room for Harry Potter now:cool1: And it wont be so chilly we couldnt swim:) And the biggest thing is we can be here for Grandpa for sure!;)

dmbfan
02-09-2010, 09:45 AM
Oh so sorry to read this...:sad1: But it sounds like your making the right choice, and your right, look at all the positve that comes with this and in the end it will work itself out.

I was looking forward to meetin you all but maybe there will be another time in the future will cross path.

:grouphug:

cantwaittoseemickey
02-09-2010, 09:49 AM
Hey Tonya...............sounds like the right decision. Had something happened while you were gone, right or wrong, you probably would have never forgiven yourself. Enjoy every precious minute with your FIL. Hugs to dh and........................

July's not that far away :) Just think, more time to plan!

You are so right. Thank you. :grouphug:

cantwaittoseemickey
02-09-2010, 09:57 AM
Awww, Tonya :grouphug: I am so sorry to hear that you have to reschedule. :sad1: But you have had so much going on lately, and with FIL's health so critical right now, I think you made the right decision. But you already know that. I'll be waiting for your July PTR. :hug: :grouphug: :hug: :grouphug:

Thank you:grouphug: It is like a 100lb wieght has been lifted off me. My heart breaks for Ty in so many ways but he is a strong little guy and he is handling it well. He keeps asking me when July is so we will get busy on the links as soon as our date is confirmed which she told me to call when things settled down . I belive she was going to go ahead and reserve the date for us though.

cantwaittoseemickey
02-09-2010, 10:19 AM
Oh so sorry to read this...:sad1: But it sounds like your making the right choice, and your right, look at all the positve that comes with this and in the end it will work itself out.

I was looking forward to meetin you all but maybe there will be another time in the future will cross path.

:grouphug:

Christine we were so excited that we were going to meet you and your family too. :( I wish it would have worked out. Ty was asking what day we were going to meet Jake too. You are so right maybe we will cross paths another time:). I cannot wait to read your trip report when you get back from your volunteer trip! I hope it warms up a bit before you get there too. hugs!

pnutallergymom
02-09-2010, 07:11 PM
Awww..Tonya. I am so sorry to hear this. It really sounds like you made the right decision for your family. You will be able to enjoy so much more in July without all of the "what if's" if you left next week.

Many thoughts and prayers for you and your family.

Can't wait to keep following along with all of your plans!!!

kellyw8863
02-10-2010, 02:45 PM
I'm so sorry.:grouphug:

dmbfan
02-11-2010, 10:20 PM
Just checking on you...how are things with your FIL going? Keeping you in my thoughts and prayers....:grouphug:

cantwaittoseemickey
02-12-2010, 09:41 AM
Awww..Tonya. I am so sorry to hear this. It really sounds like you made the right decision for your family. You will be able to enjoy so much more in July without all of the "what if's" if you left next week.

Many thoughts and prayers for you and your family.

Can't wait to keep following along with all of your plans!!!

I am just itching to begin a new ptr arg. But Im going to wait for a bit. But believe me I have came on here several times to start one.But I will wait till I find out if our dates are secured for sure. I will just keep going with this one till then:)

cantwaittoseemickey
02-12-2010, 09:42 AM
I'm so sorry.:grouphug:

Thank you Kelly.:grouphug:

cantwaittoseemickey
02-12-2010, 10:07 AM
Just checking on you...how are things with your FIL going? Keeping you in my thoughts and prayers....:grouphug:

Thank you everyone checking on us. We trully appreciate ate the thoughts and hugs.

Fil is at a hospice facility now. They are just keeping him comfortable. The whole family and friends have been going to see him. Dh comes home from work then spends the rest of the day there. I have been there a few times with him and we just sit and talk. Fil is mostly sleeping now.We have taken the kids to see him but I think now it is to the point its not good for them to be in there. I left the kids with my mom and she got really uneasey with giving Ty his meds so I only go with dh every once in a while and stay for just a little bit while the kids are watching tv in a lounge room then we leave.

Ty is having somewhat of a hard time with his daddy being gone alot and constantly asks when he's coming home. He is latching on to the craziest things. Last night it was carrots I had to take away from him as he wanted to "keep the poor little things". (not to eat but to keep as buddies).doesnt help that he is having alot of trouble with his stomache and I am beyond frustrated with that right now.

I have yet to unpack one single suitcase. They are all just sitting in the livingroom. I just dont want to carry the summer clothes back to the basement and we have no room for them in our drawers lol. We have thought about doing an overnight this week somewhere really close as dh is having his knee surgery next week but we are just going to take it day by day.

ok I have written a novel. :eek:

yinyanggirls
02-12-2010, 06:21 PM
Sounds like you are making the best of the situation. It is so hard to watch our loved ones suffer. I agree, if it's making the kids uncomfortable they don't need to go in every day. I'm sorry you guys had to postpone, but it will be better when you do go, no worries about home. :hug:

cantwaittoseemickey
02-15-2010, 04:51 PM
My fil just went to be with our Good Lord above. :sad1::sad1:

pipersmom
02-15-2010, 05:27 PM
I'm so sorry Tonya :hug: We'll be keeping you in our thoughts and prayers. :grouphug:

VroomVroomLightning
02-15-2010, 05:28 PM
I am very sorry for your loss. I will be keeping you and your family in my prayers. :hug:

Thumper321
02-15-2010, 05:33 PM
:sad1: I'm so sorry, Tonya. There are no words. And I know it brings no comfort right now, but at least you know now that you made the right decision about postponing the trip. Now you guys can be together with family during such a hard time. You'll all be in my thoughts. :hug:

Momofwishkid
02-15-2010, 06:11 PM
Tonya, Im so sorry for your loss. :hug:

kdzbear
02-15-2010, 08:54 PM
Tonya, I am so sorry for you and your family. I hope that he is smiling up in heaven now that he is free from pain. We will pray for you and your family during this difficult time. :grouphug::grouphug::grouphug:

cantwaittoseemickey
02-15-2010, 09:09 PM
Thank you all so very much. Your thoughts and prayers mean so much to me. Dh was able to be with fil during this time. We are so thankful that we were able to be here. Unfortunately I was not able to be there as we had a snow storm today and since hubby had spent the night I had no way there so we chatted on IM most of the day and called each other off and on so we could "be together" during this time. My bil had just made it there after 2 hours on the road and sil was not able to make it in time but made it just after. They have already cancelled school for tomarrow and I am so greatful for that.

yinyanggirls
02-15-2010, 10:07 PM
I'm so sorry Tonya. I hope you and Tim find some comfort in being with the other family members. Are your kids handling it okay?

cantwaittoseemickey
02-16-2010, 08:00 AM
They are doing ok right now. I think it will be different when we go to the visitation and on Friday is my nieces birthday that will be another tough day.For Ty it has to be a kind of "in front of him" thing so when he goes and grandpa isnt there then he will understand more. Sierra was doing ok last night. We had tried to prepare them both as much as we could.

alaskanabbott
02-16-2010, 05:06 PM
I'm so sorry about your loss. Yours was the first PTR I read...and I stayed up all night telling my husband about it. I hope you and your family find some comfort during this.

cantwaittoseemickey
02-17-2010, 12:45 PM
Thank you. We are having a really tough time right now.I am going to take a break from here but will hopefully be back soon. Too much going on right now.I will try to lurk but I cannot keep up. Hugs to all.

Tonya

kellyw8863
02-17-2010, 01:35 PM
:grouphug::grouphug::grouphug:

pnutallergymom
02-17-2010, 01:53 PM
Hey Tonya,

Just wanted to stop in and give you a :hug:. Many thoughts and prayers to you and your loved ones during this most difficult time.

jenb1023
02-17-2010, 04:07 PM
I know we frequent a lot of the same threads and I have ben subscribed to your PTR for a long time but have not had a chance to read it until today. I am so sorry for your loss, that you had to reschedule your trip and for all of the hardships you guys have been going through. I look forward to your PTR for July when you are ready to start it. :grouphug: to you and your family!

cantwaittoseemickey
02-21-2010, 09:52 PM
:welcome:Thank you for reading. We really appreciate those who read our ptr-report.


I am going to wait till after his Complex care team meeting in March before we go full force into it. Just so we knoo if he will needs surgery this summer as we cannot do the suregy and disney both in one summer. But I will definatly get one going soon!!!:cool1::cool1::

I know we frequent a lot of the same threads and I have ben subscribed to your PTR for a long time but have not had a chance to read it until today. I am so sorry for your loss, that you had to reschedule your trip and for all of the hardships you guys have been going through. I look forward to your PTR for July when you are ready to start it. :grouphug: to you and your family!

cantwaittoseemickey
02-21-2010, 09:57 PM
Now that I mailed all of the papers and things back to MAW. I kind of feel so bummed out. seriously. Also when I renturned them I asked if the check was right as it was writtn for 3. Instead of 4. She said it was right and I am still confused since there are 4 of us. I trully appreciate everything they have done for us. In every way. I am just a little confused that.s all. and wondered if anyone had this happen to them. The only thng I could think of is b/c Ty is tube fed? But then what happens with the rest of his portion? If you have a gtube fed child and can offer some help please let me know. Shout me out a pm. Thank you:)

pnutallergymom
02-22-2010, 05:09 PM
Hi Tonya,

I guess that surprises me that they were only giving you $$ for 3??? Brigge is tube fed and was TPN dependant but does eat PO feeds sometimes. I know that we were getting a stipend for 6...her included.

That seems strange.

I just wanted to check in and see how you guys were all doing?? Hanging in there I hope. I've been thinking of all of you. I hope you continue to keep posting!!! :hug:

cantwaittoseemickey
02-22-2010, 07:02 PM
Thank you for checking on us Shannon. You are so thoughtful:grouphug:We are ok. I try to keep up and read and reply here and there.

Tim had his knee surgery today so that was a hurdle down. I was pretty worried about it as it was his first surgery and I was there by myself. He pulled through just fine. He had a torn miniscus, a tattered cartilage to where it was jagged and alot of fluid in his knee.

Ty is doing ok. We are still having problems with the constipation.It is taking so much meds. The last two days have been bad with his swallowing but he goes through those rough patches.

I just found out that I get to stand up at my cousins wedding in April if my husband is off that weekend. We would get to travel to Tenn:cool1:I am so excited! Sierra actually has a camp that weekend she looks forward to that trip every year so we will have to see how it all works out. But it is something to look forward to. Now I really need to work on this weight. COME ON warmer temps so I can at least do some bike riding:rotfl2:

pacrosby
02-22-2010, 07:56 PM
Hey Tonya.......

I just read about the loss of your FIL. I'm so sorry. I know you were all 'expecting' it but it doesn't make it any easier. Take care of each other:hug:

cantwaittoseemickey
02-26-2010, 02:09 PM
Please see the link in my siggy for our NEW PTR! THANK YOU FOR FOLLOWING US:love: