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

[dmbfan]

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

 

[cantwaittoseemickey]

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]

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...

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

 

[cantwaittoseemickey]

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...

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

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

 

[Momofwishkid]

Tonya, I just wanted to say Im so sorry your family is going through this.

 

[cantwaittoseemickey]

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

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 Ty LOVES mini golf!! shhhh!! Keeping it a secret till that day!! lol I know I can I know I can I know I can!

 

[cantwaittoseemickey]

Tonya, I just wanted to say Im so sorry your family is going through this.

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

 

[Momofwishkid]

Im so glad things are looking up. mini golf is so fun. I cant wait to hear about it. Be sure to take pics. I think your plan looks pretty good.

 

[pnutallergymom]

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

 

[kellyw8863]

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.

 

[noahsketomom]

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.

Blessings,

 

[cantwaittoseemickey]

Thank you

 

[Thumper321]

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. 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!

 

[cantwaittoseemickey]

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]

5 more days till we get our MAW pack!! The kids still don't know it 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 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]

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.

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

 

[VroomVroomLightning]

I have been following your TR and just realized you are from Ohio!! So I am de-lurking to say Hi 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]

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.

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

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]

I have been following your TR and just realized you are from Ohio!! So I am de-lurking to say Hi 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]

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...

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