Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Pre-Trip Reports and Plans
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 04-26-2010, 03:14 PM   #151
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Quote:
Originally Posted by wishin' on a star View Post
Hooray for the BIG GIVE!!! We all know how amazingly generous they are. I am right there with you on making this trip about all of the kids. Certainly Catherine has been through more, but really, the other kids in these families have their own struggles and deserve this wish as well.

Good news about getting back in touch with your SIL. Family can never be replaced.
They have done some wonderful things haven't they? And they are the most talented group of people I have ever seen.
cantwaittoseemickey is offline   Reply With Quote
Old 04-27-2010, 01:54 PM   #152
jenb1023
DIS Veteran
 
jenb1023's Avatar
 
Join Date: Jun 2007
Location: Central PA
Posts: 2,508

Hi Tonya! Sorry to have been MIA lately. I was crazy busy and not on the boards for awhile and it is taking me forever to catch up on all of my threads!

I hope the sleep study helps you figure out the fatigue issues. We need Ty to be full of energy for his trip!

Wow - that 2008 trip was something - - and not in a good way. You are a much nicer and more patient person than I am. I would have heads rolling several times over things you went through.

I know your Wish trip will be amazing! That is a lot of stuff to do in not a lot of time so make sure you use your WISH buttons wherever possible and plan for your top rides/shows at each park since it will be impossible to do it all.

Looking forward to hearing more about your plans and congrats on the Big Give!!!!
__________________
Me (Jen) DH DD 11 Mickey


Apr 22-28, 2007 - WL, Jan 26-Feb 2, 2008 - AKL, Nov 15-23, 2008 - Pop,

Oct 30-Nov 3, 2009 Pop - me and DD, May 15-17, 21-23, 2010 - Universal/Poly
Jan 22-30, 2011 - POFQ, May 10-13, 2012 DCL on the Dream Sept 7-11, 2012 DD's surprise bday trip - BC Aug 30-Sept 2, 2013 - AOA, May 23-27, 2014 - 24 Hour Event - WL, June 29 - July 2, 2014 - POP, Upcoming - Nov 29 - Dec 6, 2014 - BC/ASSp - 1st Xmas Trip
jenb1023 is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 04-27-2010, 02:42 PM   #153
Momofwishkid
DIS Veteran
 
Momofwishkid's Avatar
 
Join Date: Oct 2009
Posts: 729

Quote:
Originally Posted by cantwaittoseemickey View Post
We are sleep study bound Ty is having problems with paleness and fatigue so the pulmo has ordered a sleep study to rule out hypopsomething?? where he would be shallow breathing at night.He really feels it is more like a vasovagal response with his reflux though. Ty is dx'd with dyautonomia by symptoms rather then tests and he wants us to persue testing which will mean another trip to Cleveland Clinic or somewhere that sees kids for it which there arent too many that I am aware of. He mentioned Familial dysautonomia. He also asked why he hasnt had the nissen for his reflux. From what I understand the Nissen is not for kids with motility issues as it can cause some big problems. As bad as I dont want him to have hypopwhatever it is it seems like it would be the easiest to treat and it would give him the better chance of getting more energy during the day.
Keeping Ty in my thoughts for the sleep study and Congrats on the Big Give!! These women and men are absolutley amazing!
__________________
Me (Jennifer) DH DD(11) Kia DS(8) wishkid Gavin DS(6) Caiden
Gavin's wish trip http://www.disboards.com/showthread.php?t=2325898
Momofwishkid is offline   Reply With Quote
Old 04-27-2010, 08:23 PM   #154
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Quote:
Originally Posted by jenb1023 View Post
Hi Tonya! Sorry to have been MIA lately. I was crazy busy and not on the boards for awhile and it is taking me forever to catch up on all of my threads!

It is sooo hard to catch up isn't it? I try to check daily and still have a hard time keeping up

I hope the sleep study helps you figure out the fatigue issues. We need Ty to be full of energy for his trip!

Definately! I think he will be ok as long as we allow him to rest and pack his cooling vest. Although Im still wondering how to get the icepacks on the plane

Wow - that 2008 trip was something - - and not in a good way. You are a much nicer and more patient person than I am. I would have heads rolling several times over things you went through.

lol I did let things be known but found if I lost my cool then the family lost their cool so I held it together (sort of) till we got home


I know your Wish trip will be amazing! That is a lot of stuff to do in not a lot of time so make sure you use your WISH buttons wherever possible and plan for your top rides/shows at each park since it will be impossible to do it all.

Thank you for the tip. I am getting ready to sit and make out some maps of things we want to do. I read it (in my 3 hours of reading the Dis) on a tr today that it works. Now if I just don't leave it all behind at the villa

Looking forward to hearing more about your plans and congrats on the Big
Give!!!!
Thank you! We are SO excited about the Big Give! I think my mom is as excited as I am lol. I keep calling her and telling her about it
cantwaittoseemickey is offline   Reply With Quote
Old 04-27-2010, 08:27 PM   #155
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Quote:
Originally Posted by Momofwishkid View Post
Keeping Ty in my thoughts for the sleep study and Congrats on the Big Give!! These women and men are absolutley amazing!
Thank you! I think it will be a while before he will have it as they asked me if I wanted a cancellation if it happens and that was before we even scheduled it We don't have a date as they are waiting for the dr to get back to them on a question they have.
cantwaittoseemickey is offline   Reply With Quote
Old 04-27-2010, 08:44 PM   #156
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

I so keep forgetting to hit the multiquote button

So today I called Cleveland Clinic and the clinic doesn't see kids. So they directed me to Rainbow Babies and I spoke with a nurse who told me they have openings in July the week we leave for Disney umm no we can't do that. So I think its going to be quite a while. I also looked up Familial Dysautonomia and well nope that's not it either for sure. But there are different types so we will see.

I also sat here for 3 hours reading ONE tr today lol. I just love reading about the past Wish Trippers and looking at all the wonderful pictures that have been posted. Believe me I shed my share of tears today Since dh worked all day and the kids were in school I had a little "me" time. And what better way to spend it then being on the Dis

Also this evening I finally tackled my fireplaceIt was so dusty so I got it all cleaned up for the summer. I have wanted to do that for a while now so I'm glad to have gotten that all done. One thing off my list!

Tonight Ty put on a little "show" for us. He can wiggle his ears and put one eyebrow up while the other one is down and vice versaCraziest thing I've ever seen I told him his favorite character should be Dopey! I think he is adorable.We all do like our ears as they slightly stick out. And Ty has the extra bonus to be able to move them
cantwaittoseemickey is offline   Reply With Quote
Old 04-27-2010, 09:32 PM   #157
wishin' on a star
DIS Veteran
 
wishin' on a star's Avatar
 
Join Date: Mar 2010
Location: Olney, Maryland
Posts: 508

You go girl, cleaning up the fireplace...my house is so neglected these days! My DH is out playing baseball tonight, so here I am on the DIS...yes I should be doing laundry since I promised Carmella she would have a clean shirt to wear tomorrow! (My girls wear uniforms, and her other option is her jumper, and I guess in 2nd grade that is now very uncool. Who knew? )

Anyway, wow...that's a long time to wait for the sleep study!
__________________
Laura (me!) Dave (DH) Carmella 11 Catherine 10 (MAW princess in 2010!) John 8
Make-A-Wish PTR Catherine's MAW TR
wishin' on a star is offline   Reply With Quote
Old 04-27-2010, 10:57 PM   #158
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Yes it is. I think I will give them a reminder call tomarrow I love jumpsuits!! We have not had to wear uniform clothes but sometimes it would be easier with the rules they have here.
cantwaittoseemickey is offline   Reply With Quote
Old 04-29-2010, 06:16 PM   #159
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Today was a very special day for me. I spent two hours with my sil and my niece We talked and shed tears and talked some more and shed some more tears. It was so good to talk to her and see my niece who missed her auntie!!
cantwaittoseemickey is offline   Reply With Quote
Old 04-29-2010, 10:53 PM   #160
wishin' on a star
DIS Veteran
 
wishin' on a star's Avatar
 
Join Date: Mar 2010
Location: Olney, Maryland
Posts: 508

Quote:
Originally Posted by cantwaittoseemickey View Post
Today was a very special day for me. I spent two hours with my sil and my niece We talked and shed tears and talked some more and shed some more tears. It was so good to talk to her and see my niece who missed her auntie!!
That's awesome!
__________________
Laura (me!) Dave (DH) Carmella 11 Catherine 10 (MAW princess in 2010!) John 8
Make-A-Wish PTR Catherine's MAW TR
wishin' on a star is offline   Reply With Quote
Old 04-30-2010, 05:55 PM   #161
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Dh and I were sitting on the couch today talking since they were working on our electric. We had no electric for 5 hours He looks at me and says "NOW i'm getting excited about Disney" I told him it's about time lol.

Then yesterday I was on the phone asking about our ressies for Garden Grill to make sure we had the right time (yep) and they have me on hold and Ty looks at me with this hilarious face. "I HEAR DISNEY MUSIC!" He made sure to tell me that we are taking his cooling vest. Although I need to ask on the Wish trippers thread about packing that
cantwaittoseemickey is offline   Reply With Quote
Old 05-01-2010, 09:05 AM   #162
kellyw8863
DIS Veteran
 
kellyw8863's Avatar
 
Join Date: Jun 2009
Posts: 647

Yay for the Big Give! They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.
__________________
Kelly (Me - Mom) - Old Garth (DH - Dad) - Not Quite as Old

Maya (DD) - 9 Ali (DD - Wishkid) - 7


kellyw8863 is offline   Reply With Quote
Old 05-01-2010, 01:34 PM   #163
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Quote:
Originally Posted by kellyw8863 View Post
Yay for the Big Give! They are an amazing group of people. I'm hoping to get involved myself once I get my TR all done. As for the cooling vest, Ali's mito doc told us not to bother with her. They really only work if there is little to no humidity, as they rely on evaporation in order to cool. Instead, we put ice in her enteral bags and bought misting fans at the Wal-Mart down the street from GKTW ($7 as opposed to $20 in the parks). And other than that, we just resigned ourselves to the fact that we would not be spending any afternoons in the parks. It all worked out, as the girls LOVED being at GKTW.
We have the one that that uses evaporation but we also have the "sta cool" vest. It actually has these little icepack things in it. There are 2 in the front and 2 in the back. He loves this one and wears it anytime it is warm outside. He has already asked for us to take it with us. I was wondering how to pack the icepacks that go with it but I think I just figured it out. As of right now we will have to take some meds that must be frozen until use. So I could use those as the icepaks to keep to keep his meds cold. I am assuming I can carry on his meds in that cooler back and they shouldn't count against our carry ons.
cantwaittoseemickey is offline   Reply With Quote
Old 05-03-2010, 12:54 AM   #164
yinyanggirls
DIS Veteran
 
yinyanggirls's Avatar
 
Join Date: Sep 2009
Location: southern AZ
Posts: 1,872

Wow, you've had so much great news lately. I'm so happy for you guys!!!
yinyanggirls is offline   Reply With Quote
Old 05-03-2010, 10:48 PM   #165
cantwaittoseemickey
DIS Veteran
 
cantwaittoseemickey's Avatar
 
Join Date: Jan 2005
Posts: 1,322

Quote:
Originally Posted by yinyanggirls View Post
Wow, you've had so much great news lately. I'm so happy for you guys!!!
Thank you We are so greatful for things looking up!

Ok so a little more good news today! The DME guy called today and he is coming to the house this week to take a look at Ty's wheelchair to see if we can swap his handles and seat from his old wheelchair and put it on his new one. His old one just will not fold as the frame is messed up and his seat has his name on it and supports him alot better when he needs it. Granted he is not in it full time but when he is a little better support can certainly help. But we just arent sure they are compatable. He is driving a LONG way and we are so greatful.

Also after a bit of persistance we can have Ty's sleep study done close to home. That saves us from having to get a hotel room for the night which really helps. They wanted it done at the main hospital b/c of his gtube. But it all worked out. It is scheduled in June.

We hope to hear about our flights very soon. I'm getting a bit nervous about flying again. Im just not a great flyer at all but I know I can do this for my Ty. (I might need a bit of encouragement from my dis family)
cantwaittoseemickey is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 12:35 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: