Hayley's Make A Wish Trip MAW/GKTW (Nov/Dec 2010)

[mjarecki]

Just to let you know our MAW arranged for Hill Rom to deliver the machine and all we have to bring is Michael's vest, not even the tubes. You might want to look into it so that you don't have to lug that heavy thing with you!

If nothing else you could come over and use the one we have in our villa. WE have to bring our own oxygen conentrator, we couldn't get our home health to be very nice and arrange it for us (it cost them and taking a portable one they have doesn't so we ended up getting stuck bringing one with us).

 

[rcq925]

Thanks Mindy! We dragged our vest to Disney two years ago and with the nice bag that Hill-Rom makes, everything fits right inside the bag and it has a handle and rolls on wheels. Not sure if you have the same model or the bag, but it actually is really easy to travel with.

I am also a germaphobe when it comes to Hayley. We actually lug our own vest the the hospital everytime she is hospitalized, because I don't want to use the one at the hospital due to germs and bacteria. I know they clean it, but you never know how well they clean it.

I am going to call Give Kids the World and ask them if there is a large pot that we can use on the stove top to boil Hayley's Pari LC nebs. We normally boil them after every treatment.

How do you clean Michael's? Have you thought about how you will do it while at GKTW?

In reading the TTA website, I think that you can use any ice packs as long as they are frozen solid (No mushy liquid). I am also entertaining the idea of just leaving it out and bringing a few baggies and then asking for ice from a restaurant once we clear security.

We only have a 2 hour flight to Orlando, so that would be fine to keep it cold until we arrive at GKTW.

 

[Mom2mitokids]

I'm loving all the new Big Give stuff. That dress is so cute. Kylee has 2 meds that need refrigeration and no clue how to keep them cold. We have a 4.5 hour plane ride. Hopefully...if i buy 3 big hard ice packs they will stay cold.

 

[froggy33]

Hi there!

The Ohana dress was from me...my husband sent it from work and was supposed to put a little note in it, but of course he forgot. Husbands I even told him what to write!

I am so glad she liked it and that she gets to match!

Have a wonderful time on your trip! Savor every single minute, cause as you know they go by much to quickly!

Jessica

 

[rcq925]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

She said, "Mom that's me!"

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!

 

[rcq925]

Hi there!

The Ohana dress was from me...my husband sent it from work and was supposed to put a little note in it, but of course he forgot. Husbands I even told him what to write!

I am so glad she liked it and that she gets to match!

Have a wonderful time on your trip! Savor every single minute, cause as you know they go by much to quickly!

Jessica

Yes I do know husbands!!!

Thank you Jessica for the beautiful dress! She loves it and we are going to look great when we go to O'hana!!!

 

[blessedmom4]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

She said, "Mom that's me!"

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!

Congratulations to SUPER STAR HAYLEY!!! What a beauty and great model for your MAW!!!

Free dinner with dessert....that is awesome! Just the start to all of the Pixie Dust in all of your future!

I am so happy for and proud of you Hayley!!

 

[fulseasmama]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

She said, "Mom that's me!"

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!

Way to go Hayley...that is so cool. What an awesome surprise and so cool that she is helping Make a Wish with their fundraising campaign.

 

[my*2*angels]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

She said, "Mom that's me!"

It was so cool. We asked for the manager to come over and he gave us a few of the nice laminated cards with Hayley and two paragraphs about her and her wish! It is the same on both sides.

Then we heard our waitress showing the table behind us the card and asking them to donate to Make A Wish and make Hayley's wish come true. It was so awesome! The manager said they are doing great raising money and even bought our dinner with free desert as well!!

That is so COOL!

 

[rcq925]

We are getting so close and SO EXCITED

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

 

[blessedmom4]

We are getting so close and SO EXCITED

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

YES, YES, YES!!! It is her MAW trip, anything goes! If she is comfortable, that is all that matters! WOO HOO!!!! You are so close!

 

[Shannon84]

I have just caught myself up on your PTR and hope that you guys have a magical trip I cannot wait to hear all about it

 

[that's nice]

Hayley was chosen to be our local area person for Applebee's Make A Wish Campaign! We did not know it had started yet, until we went to Applebee's for dinner tonight. We were sitting waiting for a table and Hayley saw this on the wall!

How cool is that! What a great picture!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

Of course she can.... it is still 'summer' in Florida. Isn't it?

Don't listen to me though... I'm a guy that has no idea!

 

[mjarecki]

Thanks Mindy! We dragged our vest to Disney two years ago and with the nice bag that Hill-Rom makes, everything fits right inside the bag and it has a handle and rolls on wheels. Not sure if you have the same model or the bag, but it actually is really easy to travel with.

I am also a germaphobe when it comes to Hayley. We actually lug our own vest the the hospital everytime she is hospitalized, because I don't want to use the one at the hospital due to germs and bacteria. I know they clean it, but you never know how well they clean it.

I am going to call Give Kids the World and ask them if there is a large pot that we can use on the stove top to boil Hayley's Pari LC nebs. We normally boil them after every treatment.

How do you clean Michael's? Have you thought about how you will do it while at GKTW?

In reading the TTA website, I think that you can use any ice packs as long as they are frozen solid (No mushy liquid). I am also entertaining the idea of just leaving it out and bringing a few baggies and then asking for ice from a restaurant once we clear security.

We only have a 2 hour flight to Orlando, so that would be fine to keep it cold until we arrive at GKTW.

I hadn't really thought about the nebulizer part. Luckily I think we have 7 of them, so I'll probably just bring them all, then I don't have to worry about boiling them. Everytime we go to the Pulmonologist I ask for more-one of these days they'll probably cut me off. Can't believe we're less than 2 weeks away from our trips!

 

[rcq925]

How cool is that! What a great picture!


Of course she can.... it is still 'summer' in Florida. Isn't it?

Don't listen to me though... I'm a guy that has no idea!

It never hurts to have a guy's point of view!

 

[rcq925]

I hadn't really thought about the nebulizer part. Luckily I think we have 7 of them, so I'll probably just bring them all, then I don't have to worry about boiling them. Everytime we go to the Pulmonologist I ask for more-one of these days they'll probably cut me off. Can't believe we're less than 2 weeks away from our trips!

I can't believe it either!!!

Hayley does two different meds (two different nebulizers) in the morning and three different meds at night, so we have to clean them while there!

 

[Woth2982]

Hey I have been reading your pRT and I am finally caught up! So sorry Hayley wasn't feeling well, but at least she is better now! So exciting that your trip is so close! Can't wait to hear all about it!

 

[Mom2mitokids]

We are getting so close and SO EXCITED

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

Well...here in California..we are still warm and Kylee is still wearing her white sandals. She wore them all weekend with her Cinderella and Tinkerbell costumes.

 

[wishin' on a star]

We are getting so close and SO EXCITED

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

White sandals sound good to me! I would wear what is the most comfortable. Catherine wore her sneakers with some of her dresses, crocs...seriously, you want her to be comfy in whatever she has on.

Woo Hoo! YOu guys are getting VERY close!

 

[my*2*angels]

We are getting so close and SO EXCITED

Now I am getting ready to start packing this week and now I am worried about what shoes to pack for Hayley. She has all these beautiful dresses from the Big Give and I have no idea what shoes to have her wear with them!!!

She has a beautiful Cinderella Minnie dress that is white and light blue, but no shoes to match, except her white summer sandals. I know that it has always been a fashion rule that you should not wear white shoes after Labor Day.

What do you guys think? Can she get away with wearing the white sandals?

YES! She can wear those sandals! We wear white shoes year round down here!LOL Whatever is going to be comfy for her!!!!