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

dmbfan said:
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
Click to expand...

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;)
 
pnutallergymom said:
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!!! :)
Click to expand...

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
 
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!
 
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!!!
 


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.
 
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.
 


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:).
 
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

006.jpg


and a video of one of them in action
 
very cool lights on the wheels....sounds like you are all set and ready to go...:cool1::cool1::cool1::
 
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:(
 
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 said:
: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:
Click to expand...

Ooohh Girl you better get started:rotfl2: Its going to creep up on you!!!
 
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!!
 
You must log in or register to reply here.

Share this page


GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!


New DISboards Threads

C
Water slide camera for action pictures?
Replies
0
Views
96
CTCruiser221
C
Sith
A few questions in regards to sending my son and his girlfriend to Disneyland without me
Replies
1
Views
187
starry_solo
starry_solo
M
AC on Pirates
Replies
0
Views
128
Mar_613
M
gregf71
Paseo?! Has anyone been yet?!
Replies
0
Views
122
gregf71
gregf71
M
ABD vs DCL
Replies
3
Views
177
Bad Pink Tink 2.0
Bad Pink Tink 2.0
S
What percentage of owners are membership extras eligible?
Replies
1
Views
181
DisTravels
DisTravels
NEWS & UPDATES



Latest posts







facebook twitter
Top