Make a Wish (and other organizations) - Wish Trippers UNITE! Volume THREE! :)

[kailatilear]

I am in need of some packing help. With Abby's trip being end of Feb thru beginning of March, I am not sure what to pack. Jeans, shorts, capris? I know my son and hubby will wear mostly shorts no matter what the weather, but for Abby, Kaila and myself I am not sure. I am thinking at least 1 pair of jeans for each and mainly capris for myself. I am just at a loss. Any suggestions would be greatly appreciated.

 

[tinytreasures]

I am in need of some packing help. With Abby's trip being end of Feb thru beginning of March, I am not sure what to pack. Jeans, shorts, capris? I know my son and hubby will wear mostly shorts no matter what the weather, but for Abby, Kaila and myself I am not sure. I am thinking at least 1 pair of jeans for each and mainly capris for myself. I am just at a loss. Any suggestions would be greatly appreciated.

That is soooo hard
I kept a eye on accuweather and packed the week of our trip so we knew what the weather looked like.
I wish I would have not listened to my friend when she told me to not pack warmer clothes because we were cold and ended up wearing the same thing over and over again

 

[brookerene]

I posted this on my PTR but decided I'd post the photos here.

We just received our Disney Maps in the mail. They are really nice. I thought that I would show a couple of photos that I took of what I received. They are very nice....

 

[kailatilear]

The first Big Give came today. A very special thank you to The Laxton family. It did not have the disboard name in it. As you can see the kids were very excited. They had not known about this at all until now.

Kaila, Abby and Tilear reading and wondering what it is...

They are reading and wondering what it is...

They were very excited to see the gift card. Tilear being a typical teenage boy shows so much enthusiasim.

 

[brookerene]

Kailatilear.......Congrats on the BIG GIVE and thank you to the GIVERS! We look forward to seeing what they surprise you with! Make sure you put the photos on your PTR too! BTW, may I ask how you pronounce your son's name? I have not seen it before!
This time will fly by so quickly..... savor it all! Take care of yourselves and I'm sorry about missing the sleep over.... but I'm sure all will be well. Take care.

 

[Haybuggsmom]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

 

[luvmygrlz3]

I am in need of some packing help. With Abby's trip being end of Feb thru beginning of March, I am not sure what to pack. Jeans, shorts, capris? I know my son and hubby will wear mostly shorts no matter what the weather, but for Abby, Kaila and myself I am not sure. I am thinking at least 1 pair of jeans for each and mainly capris for myself. I am just at a loss. Any suggestions would be greatly appreciated.

Good questions because I was wondering the same thing!

 

[kailatilear]

Kailatilear.......Congrats on the BIG GIVE and thank you to the GIVERS! We look forward to seeing what they surprise you with! Make sure you put the photos on your PTR too! BTW, may I ask how you pronounce your son's name? I have not seen it before!
This time will fly by so quickly..... savor it all! Take care of yourselves and I'm sorry about missing the sleep over.... but I'm sure all will be well. Take care.

Thank you... I did post it to my PTR too!!! Tilear's name is pronounced Tyler, I just had to spell it different just like Kaila. However, he hates it. People always call him Ty Lear. LOL

I hope time goes by fast and we do plan to savor it all.

You take care too and thank you for the kind words.

 

[brookerene]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

I hope that the trach goes well and it helps. It must be frightening and tiring for you and your whole family....we'll remember you all in prayer that God will give you the strength to endure and to overcome! God Bless.

 

[luvmygrlz3]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

Still continuing to pray for Haylee! I they can get her seizures under control soon...I know it has to be driving you insane! Which hospital are you at? Do they have you at CHKD?

 

[luvmygrlz3]

Congrats Kailatilear on receiving the Big Give!!! I'm sure it's quite exciting!!

 

[luvmygrlz3]

AHHHH! I was hoping to hear back from our Chapter today re: our set dates...I know I am being impatient but I NEED to know! haha My girls have asked me every day since Christmas when we are going...

Our Coordinator said we'd hear today but I guess with the Holidays she may be a bit behind.

 

[kailatilear]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

Our family is still praying for Haylee. Hoping that they can soon get her seizures under control. Here are big ((((((((((((HUGS))))))))))) for her, you and the whole family.

 

[twinmum]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

Sending prayers your way...

BTW, I can relate to your emotions about the trach - I remember feeling the same when we finally agreed to a gtube for our son. I hope this week goes well.

 

[twinmum]

I am in need of some packing help. With Abby's trip being end of Feb thru beginning of March, I am not sure what to pack. Jeans, shorts, capris? I know my son and hubby will wear mostly shorts no matter what the weather, but for Abby, Kaila and myself I am not sure. I am thinking at least 1 pair of jeans for each and mainly capris for myself. I am just at a loss. Any suggestions would be greatly appreciated.

Our son's Wish Trip was in 2008, but in early November. However, I was in WDW with the boys this year Feb 28 - March 7. I must tell you, the weather was very, very variable - from a beautiful sunny day when we spent the whole afternoon out at/in the pool at the Polynesian (with everybody else, it seemed!) to a rainy, blustery day (sorry, it's not what you want to hear!) at Epcot when we needed warmth and rain coverage (boys in fleece jackets and poncho's). We're from Canada, and this was during the Vancouver Olympics. There were loads of Canadians sporting licensed Olympic jackets etc, including me, wearing a very official-looking Olympic jacket, one that I've worn downhill skiing! The funny part was when someone came up to me in a line and actually asked me (I'm 49 although I don't really, really look it, and I'm no elite athlete)..."are you an Olympian?" Ah. NO!!!

Bring lots of layers in case you need them, I'd recommend.

Have a great trip!

 

[tinytreasures]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

praying for her

 

[Manymosi]

We had a family meeting last night to firm up some plans for our trip. This is our itinerary:

Saturday - arrive in Orlando about 2:00, go to GKTW to get our tickets etc. then on to Wilderness Lodge to settle in.
Sunday - Epcot all day- Illuminations
Monday - Magic Kingdom all day ADR's at Crystal Palace, Main Street Electrical Parade and Wishes
Tuesday - Our relaxing day - just hang around the Lodge, sleep in, laundry, etc. ADR's for lunch at Whispering Canyon Cafe.
Wednesday - Return to Epcot and Magic Kingdom to see whatever we missed and to redo our favorites (Test Track and Soarin'). This is also our 'buffer' day in case we get rained out Sunday or Monday
Thursday - Animal Kingdom then Hollywood Studios - Fantasmic. ADR's at 50's Prime Time Cafe.
Friday - hang around at GKTW, catch flight home at about 4:00

We consulted with Touring Plans.com to find out which parks will be the slowest each day. We were able to schedule each park for one of the slowest days as well as seeing all of the closing shows.

It may sound like we are trying to micromanage our plans, but we just want to do what we can ahead of time to avoid whatever crowds we can. Then when we are actually there we will just go with the flow and try to savor the whole experience. Wendy really loves gardening and cooking so we can enjoy those aspects of Disney World.

Every day at dinner I have the girls hold up their fingers to signify how many days are left. Wendy no longer can participate - we are down to just Melissa and Heather!(19 days left).

 

[syammt]

Sorry I haven't kept up with Haylee's updates it has been an extremely emotional couple of days.
THey were going to try to extibate her today but it was a no go. THey have decided to trach her on Wednesday. I am actually ok with it. I miss her smiles!!!
She is still having a lot of seizure issues but we will pick back up with fixing that after her lungs finish healing!!!

THANKS TO EVERYONE FOR YOUR THOUGHTS AND PRAYERS!!!

Our prayers are with you and your family. Hope you get to see her smile again soon.

 

[syammt]

Just wanted to let everyone know that I am almost done with our trip report, but it is still under our pretrip report link.
Also wanted to let everyone know that I have added a link to her CaringBridge page in my signature. One last thing, if anyone of you are dealing with the same disease as Madison, Job's Syndrome, there is a very nice page on facebook just for Job's patients and there family.

 

[Haybuggsmom]

Still continuing to pray for Haylee! I they can get her seizures under control soon...I know it has to be driving you insane! Which hospital are you at? Do they have you at CHKD?

We are at Portsmouth. In the PICU.