Nick's Make-a-Wish Trip!! Day Two updated! 2/28/09!

[mom2lilnick]

I wanted to thank you for sending a thank you note. You must be so busy this time of year and you didn't need to send a thank you note. I am glad they like the YOMD ears and I hope they enjoy.

Prayers for your family and we hope your trip is filled with magic.

I am glad you got it! I had a hard time getting the address off the package, and then we reused the box. By the time I went to write down the address and zip code I realized I didn't get it all, so I had to look up your city. Thank goodness it wasn't a large one! Thanks again!

 

[jham]

I love the pictures! Your kids are so cute! But I have to say I love your boys' hair!

 

[mom2lilnick]

I love the pictures! Your kids are so cute! But I have to say I love your boys' hair!

Thanks! I have a thing for long hair on boys. I let Noah have a mohawk once after someone really messed up his hair and now that is all he asks for but I think he looks good the way he is.

 

[dmbfan]

Amy, how awesome. I love the shirts and the hats. I just can not wait to hear all about your trip and going away trip. We will have to talk again soon...

 

[jessica52877]

I love the pictures! Your kids are so cute! But I have to say I love your boys' hair!

I was thinking how cute they were too! I love the new shirts and mickey ears.

 

[mom2lilnick]

Does anyone know anything about Gatorland? I have been looking at Nick's itinerary and we are set to arrive GKTW at like 1pm with our orientation being at 7ish. The papers say to ask for free tickets to gatorland to pass the time. Has anyone done that? What is it like?

 

[tinytreasures]

Does anyone know anything about Gatorland? I have been looking at Nick's itinerary and we are set to arrive GKTW at like 1pm with our orientation being at 7ish. The papers say to ask for free tickets to gatorland to pass the time. Has anyone done that? What is it like?

we will have time to burn too

 

[mom2lilnick]

I am getting so nervous, part of me is like, really the suspense of a MAW trip is just about enough, I am not sure I really need to actually take a trip. I don't know that I really want it to be all over with yet? Does that make sense?

Nick's send off party is Friday... he is so excited, there will be 9 kids, including him and 8 adults including us. I hope I remember to take lots and lots and lots of pics.

Nick had (what I hope is) he last dr's appt before we go. He has been using his inhaler an awful lot lately and after talking to his immunologist he thought it was a good idea just to head to the ped for a check up and also to get a plane safe 5 day dose of steriods. The emergency dose we keep here has to be refrigerated and I "think" is over 3 oz.

He checked out pretty well, we have to make the decision to do a 3 day course of prelone now, because he is complaining of it hurting to breathe but he is moving air well still.. or just wait it out. I don't know what to do. Also.. we added back in a med that I had hoped we had said goodbye to forever.. prevacid. I hate reflux, it really shocks me that it can be back after finally having a clear scope 18 months ago.

Now we are on the search for some pediatric sized earloop masks, we thought that the adult ones would be fine for him but they are way too big and they don't stay up over his nose. Our pharmacy is calling to see if they can get some in for us. If not, we are just going to have order them direct and pay to have them shipped out fast.

 

[iu97alum]

I am getting so nervous, part of me is like, really the suspense of a MAW trip is just about enough, I am not sure I really need to actually take a trip. I don't know that I really want it to be all over with yet? Does that make sense?

Nick's send off party is Friday... he is so excited, there will be 9 kids, including him and 8 adults including us. I hope I remember to take lots and lots and lots of pics.

Nick had (what I hope is) he last dr's appt before we go. He has been using his inhaler an awful lot lately and after talking to his immunologist he thought it was a good idea just to head to the ped for a check up and also to get a plane safe 5 day dose of steriods. The emergency dose we keep here has to be refrigerated and I "think" is over 3 oz.

He checked out pretty well, we have to make the decision to do a 3 day course of prelone now, because he is complaining of it hurting to breathe but he is moving air well still.. or just wait it out. I don't know what to do. Also.. we added back in a med that I had hoped we had said goodbye to forever.. prevacid. I hate reflux, it really shocks me that it can be back after finally having a clear scope 18 months ago.

Now we are on the search for some pediatric sized earloop masks, we thought that the adult ones would be fine for him but they are way too big and they don't stay up over his nose. Our pharmacy is calling to see if they can get some in for us. If not, we are just going to have order them direct and pay to have them shipped out fast.

Amy - Do you have a children's oncology dept in the hosptial near you? They ALWAYS have had masks for the kids. Since the kids were immunosuppressed, they had masks available for kids that were close to being neutropenic (to keep from getting sick) or for those that WERE sick (to keep the other kids from getting sick). Maybe they could give you some. We took a bunch with us last year when we went to WDW and had DD wear them in the airport, boarding/unloading plane and ME over to the resort..
HTH!

 

[llurgy]

I am getting so nervous, part of me is like, really the suspense of a MAW trip is just about enough, I am not sure I really need to actually take a trip. I don't know that I really want it to be all over with yet? Does that make sense?

Nick's send off party is Friday... he is so excited, there will be 9 kids, including him and 8 adults including us. I hope I remember to take lots and lots and lots of pics.

Nick had (what I hope is) he last dr's appt before we go. He has been using his inhaler an awful lot lately and after talking to his immunologist he thought it was a good idea just to head to the ped for a check up and also to get a plane safe 5 day dose of steriods. The emergency dose we keep here has to be refrigerated and I "think" is over 3 oz.

He checked out pretty well, we have to make the decision to do a 3 day course of prelone now, because he is complaining of it hurting to breathe but he is moving air well still.. or just wait it out. I don't know what to do. Also.. we added back in a med that I had hoped we had said goodbye to forever.. prevacid. I hate reflux, it really shocks me that it can be back after finally having a clear scope 18 months ago.

Now we are on the search for some pediatric sized earloop masks, we thought that the adult ones would be fine for him but they are way too big and they don't stay up over his nose. Our pharmacy is calling to see if they can get some in for us. If not, we are just going to have order them direct and pay to have them shipped out fast.

Fingers crossed that Nick stays healthy inbetween now and then

I know what you mean about the nervousness and awe of the MAW/GKTW trip, we too are dreading the afterwards with nothing left to set our sights on and it seems that the actual excitement of looking forward to the trip is enough for now....its weird and scarey at the same time

Mandy

 

[dmbfan]

Oh Amy, you are all going to have such an amazing time, this is something your whole family deserves. I can't wait to see all the pictures when you come back...gosh I am getting teary eyed just knowing Nick will be Disney so soon...

Did you find anything out about the Medical places near GKTW? We were told to ask our GI if he knows anyone who would be able to see Jake if he needed to be seen. Just wondering if you heard any different.

Ohh just so happy for you all...

 

[mom2lilnick]

Did you find anything out about the Medical places near GKTW? We were told to ask our GI if he knows anyone who would be able to see Jake if he needed to be seen. Just wondering if you heard any different.

Ohh just so happy for you all...

Thanks Christine, we are getting really nervous and excited. I looked up our insurance website and put in a 10 mile radius for hospitals of the zip code of GKTW tonight, of course I don't have it up anymore, but the celebration hospital that Maroo mentioned was listed. Today the immunologist told us to call if at anytime we thought Nick needed any meds called into a pharmacy down there and they would just call them in. We are so lucky to have such great docs on our boys' care.

I think things will go okay, we refilled his inhalers, he has his emergency steroids, he got an increased dose of IVIG this last time.. so "fingers crossed" nothing will happen so far from home.

We will have to find a time to call eachother before we head out or at the very least when we get back so we can chat. Hugs sweetie.

 

[Joann]

Love your pre trip report! Not sure if anyone answered you about Gatorland... we went there some years ago and it was pretty neat! Lots of gators of course a splash pad, a few shows, and you also could get your picture taken holding a little Gator and also a snake! I would go if you have nothing else to do and because it is free, The Kids will love it!

 

[mom2lilnick]

Love your pre trip report! Not sure if anyone answered you about Gatorland... we went there some years ago and it was pretty neat! Lots of gators of course a splash pad, a few shows, and you also could get your picture taken holding a little Gator and also a snake! I would go if you have nothing else to do and because it is free, The Kids will love it!

Thank you, that is really good to know. I looked at their site and it looks a lot like a place called reptile gardens in South Dakota that we like to go to, so we might check it out if we have time.

 

[maroo]

Does anyone know anything about Gatorland? I have been looking at Nick's itinerary and we are set to arrive GKTW at like 1pm with our orientation being at 7ish. The papers say to ask for free tickets to gatorland to pass the time. Has anyone done that? What is it like?

GKTW told us that Gatorland is basically a zoo. A good zoo. But a zoo.

If you have a child or children that LOVE that kind of thing, it would seem like a good way to spend time...but if not, there are other great ways to spend that extra time.

First...GKTW has SOOOOO much to do. We easily spent from 2-6 (dinner time) playing putt putt, riding the train, playing in the arcade, playing with the boats, train set, taking pictures, eating ice cream , watching a movie, doing our star , making pillows, and we didn't even get back to where the pool and horses are. (Probably too cold to swim...?)

The other thing...you have 7 days worth of tickets...of course the 3 days of Disney, 1 day Sea World, and TWO days of Universal. Since you really have 5 full days...I would do the 3 Disney, 1 Sea World and 1 Universal as a full day...which leaves no time for the second day of Universal. So you could do that on the first day, too.

But you can't do much until after your orientation, though. Check on an afternoon orientation so you could get your tickets.

You will also get your villa...so you could take a nap...get unpacked, etc.


You could also go to Walmart, which is right down the street...they have some good Disney souvies...that are cheap. And you might want to buy cheap snacks for the parks to save some money. And anything you forgot!

I guess I hate to see any wish family start right off going and going just to fill up time...you will be going and going all week. If we could do it again, we would have gone slower and rested more...and not filled up our first full day...I don't think it would have kept Lauren from getting sick, since it was a virus, but it might have helped.

Anyway...I have heard that some GKTW families did enjoy Gatorland...some went there instead of doing Universal, for example.

OR...you could go to Downtown Disney. But, you might be tempted to spend MONEY!!!

Ok...there's my 10 cents for the day....

 

[mom2lilnick]

Thanks.. we do have to hit downtown disney at some point because isn't that where the lego store is?

 

[Tracie]

Thanks.. we do have to hit downtown disney at some point because isn't that where the lego store is?

That is where the lego store is. If your kids are crazy for legos (like my boys are) you will spend a long time there! There is so much to see and do. Once upon a toy is thee also, where you can build your own light saber and of course the World of Disney store.

Tracie

 

[mom2lilnick]

That is where the lego store is. If your kids are crazy for legos (like my boys are) you will spend a long time there! There is so much to see and do. Once upon a toy is thee also, where you can build your own light saber and of course the World of Disney store.

Tracie

I have a feeling we will be spending a lot of time and money there then! So do we make that a first night thing or wait and do it later?

 

[llurgy]

I have a feeling we will be spending a lot of time and money there then! So do we make that a first night thing or wait and do it later?

We dont have our flight times yet!!
Looking at the airline/flights though we may get a flight that lands around 1.10pm so we would get to the village around 2.30pm/3.00pm??

If we had the same timetable as you do I think we would go to Downtown Disney on the first afternoon if Becca was up to it after the journey. I know that is a place we want to go but it is a place that is going to have to get squeezed in somewhere and that afternoon is a perfect opportunity.

 

[mom2lilnick]

Just brought in the mail! There is a package for Kayla!!! I can't wait for her to get home to see what is in it.. she is going to be just over the moon that there is something addressed to her!

Mandy.. I think we will do downtown Disney that first day.. it does seem like it would be a good time to fit it in, doesn't it?