Aidan's wish trip to Tink's home 3/1-3/7

[Thumper321]

Hi Miranda!

We are in Nashville! I can not get over the snow we got here!

I am so glad to hear the news was good for Keegan.

Can't wait to hear more!

Lynn

Hi, neighbor! Thank you. We were so glad to hear the results of the CT scan. I'll keep posting, as long as you guys keep reading.

 

[jharrowell]

Hi Miranda!

Finally got throught reading the thread and wow! You've had a roller coaster ride before even reaching the parks! I'm really glad everyone is OK now though!

How's this for cool, we're at WDW the same time as you and in fact are at MK on the 5th and having dinner at the Crystal Palace! (If you're having a late lunch we might even pass each other!)

Question, why no Epcot?

I know it's not really a kids park in the same way as the Magic Kingdom but it's got some great rides (Soarin', Test Track, etc), it'll be the start of the Flower and Garden festival so will look great and you absolutely have to see illuminations if you can, I think it's the best fireworks show on property. Maybe you could schedule it in on the afternoon of the 4th instead of spending the whole day at DHS ( me no likey DHS )...

Oh, can I make a suggestion, get some alien green mickey heads to wear. They are the "symbol" for want of a better word for DISers to recognise each other in the parks. If you wear one somehow (pinned to your backpack, etc) then DISers are more likely to come over and say hi! I know that i'd love to introduce myself in person assuming it doesn't effect your trip. I mean, you've a lot to fit in!

 

[Thumper321]

Hi Miranda!

Finally got throught reading the thread and wow! You've had a roller coaster ride before even reaching the parks! I'm really glad everyone is OK now though!

Thanks for stopping in! Yes, we have had a few ups and downs here recently, but everyone survived the ride, and we feel like we're on level ground again. Well, for a minute anyway. When planning a Disney trip, I don't think you can stay out of the clouds for very long.

How's this for cool, we're at WDW the same time as you and in fact are at MK on the 5th and having dinner at the Crystal Palace! (If you're having a late lunch we might even pass each other!)

Oh, that is cool! Maybe we will meet in passing.

Question, why no Epcot?

I know it's not really a kids park in the same way as the Magic Kingdom but it's got some great rides (Soarin', Test Track, etc), it'll be the start of the Flower and Garden festival so will look great and you absolutely have to see illuminations if you can, I think it's the best fireworks show on property. Maybe you could schedule it in on the afternoon of the 4th instead of spending the whole day at DHS ( me no likey DHS )...

Oh, we are doing Epcot! I've got it planned for the 6th in the afternoon and evening. We want to try to catch Illuminations while we are there. We're definitely going to cover all 4 'main' Disney parks. But Soarin' is on our "Must Do" list!

Oh, can I make a suggestion, get some alien green mickey heads to wear. They are the "symbol" for want of a better word for DISers to recognise each other in the parks. If you wear one somehow (pinned to your backpack, etc) then DISers are more likely to come over and say hi! I know that i'd love to introduce myself in person assuming it doesn't effect your trip. I mean, you've a lot to fit in!

Now, please tell me where I might get some alien green mickey heads?!?! If I can figure out where to get them, I'm not opposed to pinning one on our backpack. Will you be wearing one? If I see it, I'll introduce myself first. Yes, we have a lot to fit in, but thanks to DIS, I think we might be able to do it strategically. So say hi if you see us!

 

[jharrowell]

Before I say anything else...

What are you doing up this time of the morning, what is it 2 - 3 am there?

Anyhoo, there's a whole thread on the green mickey heads but it boils down to getting a classic mickey shape in a bright "home depot" lime green. Most people just print their own nowadays (I'd advise laminating it).

It doesn't have to be a specific size so if you've got a good color printer just run one off on a bit of A4/A5 (wait, you guys don't use the A standard, so A4 would be the 11 1/2 x 8 standard for printing letters, A5 is half that).

Then just pin it to something, turn it into a button, whatever floats your boat.

The idea being that when us DISers see a funky green mickey head in a color that Disney would almost never use, we know it's another DISer.

If you need a design template, go to that thread I mentioned and they have them on there. (Sorry I can't remember where the thread is, probably in community or just for fun).

Really glad you're going to Epcot, I didn't see it in your list. I consider Epcot to be the best of the parks (though I may be considered weird).

Assuming none of your kids are afraid of firewords/loud noises, definately go and see Illuminations. We're making it a feature of this trip by doing an Illuminations cruise, though we'll have lots of room to move around as we got a pontoon but there's only 3 of us!


Edit:

Here's the thread (or at least a thread):

http://www.disboards.com/showthread.php?p=35228619

 

[jenb1023]

Just joining in! Plans sound great so far! Keep us posted on how the boys are feeling.

 

[Thumper321]

Just joining in! Plans sound great so far! Keep us posted on how the boys are feeling.

Hi, Jen! Glad to have you following along. I will definitely keep you posted!

 

[Thumper321]

Before I say anything else...

What are you doing up this time of the morning, what is it 2 - 3 am there?

Anyhoo, there's a whole thread on the green mickey heads but it boils down to getting a classic mickey shape in a bright "home depot" lime green. Most people just print their own nowadays (I'd advise laminating it).

It doesn't have to be a specific size so if you've got a good color printer just run one off on a bit of A4/A5 (wait, you guys don't use the A standard, so A4 would be the 11 1/2 x 8 standard for printing letters, A5 is half that).

Then just pin it to something, turn it into a button, whatever floats your boat.

The idea being that when us DISers see a funky green mickey head in a color that Disney would almost never use, we know it's another DISer.

If you need a design template, go to that thread I mentioned and they have them on there. (Sorry I can't remember where the thread is, probably in community or just for fun).

Really glad you're going to Epcot, I didn't see it in your list. I consider Epcot to be the best of the parks (though I may be considered weird).

Assuming none of your kids are afraid of firewords/loud noises, definately go and see Illuminations. We're making it a feature of this trip by doing an Illuminations cruise, though we'll have lots of room to move around as we got a pontoon but there's only 3 of us!


Edit:

Here's the thread (or at least a thread):

http://www.disboards.com/showthread.php?p=35228619

I had gone to be early the other night, and my body thought it was okay to wake up at 3:00 in the morning. I couldn't go back to sleep, so what else to do besides check on here.

Thanks for the link. I'm going to work on making my alien green mickey heads, so hopefully we'll be recognizable at the parks. Have fun on your Illuminations cruise!

 

[Thumper321]

We got some great news over the weekend. I received a PM letting me know that Aidan and his family have been invited to take part in the BIG GIVE! How cool is that?!?! Of course, we said yes! It's kinda like that proposal in front of Cinderella's Castle. How could you possibly say no to something so magical?! Anyway, our trip is in a month, so I can hardly wait. The boys are going to be ecstatic when they find out! So, thanks Big Givers for making things so magical for the kids! I'll be sure to post lots of pictures as the next few weeks go by!

 

[Momofwishkid]

Im so happy you guys get to be apart of the Big Give!! It trully is amazing. I get so overwhelmed with how generous these people are and how ecxited and happy the kids get. I cant help but cry with every package. I think my kids think Im crazy

 

[jharrowell]

We got some great news over the weekend. I received a PM letting me know that Aidan and his family have been invited to take part in the BIG GIVE! How cool is that?!?! Of course, we said yes! It's kinda like that proposal in front of Cinderella's Castle. How could you possibly say no to something so magical?! Anyway, our trip is in a month, so I can hardly wait. The boys are going to be ecstatic when they find out! So, thanks Big Givers for making things so magical for the kids! I'll be sure to post lots of pictures as the next few weeks go by!

That's great!

I'm so glad you got to be part of the big give! I can;t wait to see all those cool photos.

 

[HeatherSue]

We got some great news over the weekend. I received a PM letting me know that Aidan and his family have been invited to take part in the BIG GIVE! How cool is that?!?! Of course, we said yes! It's kinda like that proposal in front of Cinderella's Castle. How could you possibly say no to something so magical?! Anyway, our trip is in a month, so I can hardly wait. The boys are going to be ecstatic when they find out! So, thanks Big Givers for making things so magical for the kids! I'll be sure to post lots of pictures as the next few weeks go by!

Wow, you even managed to tie it in with Cinderella's Castle! You gave me extra warm fuzzies!

 

[pnutallergymom]

WOOOOO HOOOOO!!!!

Those Disboutiquers sure are busy!!!

Can't wait to see what you guys get!!!!

Congrats!!!!!

 

[Thumper321]

Wow, this week just keeps getting better. Recap: Keegan's CT scan came back normal, we got almost 10 inches of snow, and Aidan was chosen for the Big Give! But as if all of that wasn't enough to make the week great, we got more good news today!

Aidan's insurance has approved his special needs stroller, and we should have it within a week! That means we'll have it in time for our trip! His new leg braces will probably not be in before our trip, but this may be a blessing in disguise. While the new braces will help with his muscle spasms, I'm not sure that we want to be breaking in a brand new pair at Disney. I don't think I want to be dealing with new braces in Orlando while his orthotist is here in Tennessee. So, he'll wear his short braces for the trip, and we'll rely heavily on the stroller to hopefully reduce the spasms.

Second bit of good news. Dr. Harris is one of the top Shwachman Diamond specialists in the United States. However, he is in Cincinnati, OH. Well, I emailed Dr. Harris in January, and after reviewing his records, he decided he wanted to see Aidan. And after talking to his doctors here, it wasn't hard to get a referral. However, Aidan has medicaid. Well, it is almost impossible to get medicaid to cover an out-of-state doctor. However, we've been working on this, and today we got approval for 3 days of clinic visits and appropriate testing with Dr. Harris at Cincinnati Children's Hospital. It appears that, provided we can work out the hotel and drive up there, we will be going April 11-15. I am so glad that they approved this visit. Shwachman Diamond is so rare that very few doctors know how to treat it. At this point, they are just treating Aidan's multitude of symptoms. And that may continue, but Dr. Harris is very good at giving these kids a game plan that may help. I'm just excited that we get to see a doctor who knows other SDS kids. None of our current doctors have ever had an SDS case. They are learning just like we are. It will be so nice to have an expert on SDS give us a different perspective.

Still no word on the reveal party or who our sponsor is. We were warned in advance that it would be pretty secretive until a couple of days before, but this is almost as hard as it was to wait for our trip dates. I did say almost.

Overall, it's been a pretty good week so far!

 

[Momofwishkid]

What a great week you've had! Im so glad medicaid approved Aidan's stroller. I am waiting on approval for a wheelchair for Gavin so I know how frustrating the wait can be. May I ask how long it took them?
That is so good you get to go see a specialist who knows exactly how to treat Aidan. Im sure that is the best news of all! I sure hope you get some great ideas.

 

[Thumper321]

What a great week you've had! Im so glad medicaid approved Aidan's stroller. I am waiting on approval for a wheelchair for Gavin so I know how frustrating the wait can be. May I ask how long it took them?
That is so good you get to go see a specialist who knows exactly how to treat Aidan. Im sure that is the best news of all! I sure hope you get some great ideas.

Thanks, Jennifer! We got the orders for Aidan's stroller on 01/07/10. However, the mobility specialist had to have a letter of medical necessity and some of Aidan's medical records. Those were submitted on 01/11/10. The mobility people submitted it to medicaid on 01/18/10 for prior authorization. They approved the request yesterday, 02/02/10. And the stroller was ordered today, and we should have it within a week. So, it took a little over a month from start to finish.

I hope that Gavin's chair gets approved quickly. I called medicaid every 3 days from the time the paperwork was submitted. All I can say is stay on them. Keep calling. That also assures you that you will know as soon as it is approved instead of having to wait for the letters to reach you and the company. They can give you the authorization number over the phone, and once you have that, they can fit/order the chair. Let me know when you find out!

 

[VroomVroomLightning]

Hello there! I have been a lurker but wanted to jump in when I saw that you were coming to Cincinnati! That's where I live! I absolutely love Cincinnati Children's Hospital, they are such good people there. They have a wonderful Ronald McDonald house which parents stay in when their children are in the hospital for treatments. It is right across the street in a sense from the hospital. I am not sure if that would be an option for you to stay at when you come here or not. Just wanted to put that in there and see if it may be an option for you!

 

[Thumper321]

Hello there! I have been a lurker but wanted to jump in when I saw that you were coming to Cincinnati! That's where I live! I absolutely love Cincinnati Children's Hospital, they are such good people there. They have a wonderful Ronald McDonald house which parents stay in when their children are in the hospital for treatments. It is right across the street in a sense from the hospital. I am not sure if that would be an option for you to stay at when you come here or not. Just wanted to put that in there and see if it may be an option for you!

Hi! I'm glad you came out of lurkdom! The Ronald McDonald house might be an option for us, but we're not sure. Cincinnati's RMH operates a little differently from most of them I think. We cannot call them until 24 hours before we would need to stay. At that point, they would put our names on a list and call us if they had an opening. It's a little bit hard since we wouldn't know until the day before. We're going to have to plan for a hotel in advance. Then, assuming that we find a hotel with a good refund policy, we would get back the hotel payment for all nights except for the first if we were accepted at the RMH. I wish there was a way to know in advance, but I guess they help a lot of families there and just don't know when they will have openings. But we are going to try for the RMH! We just have to make alternative plans first.

 

[pnutallergymom]

Hey Miranda!!

That is great news about Cinci!! I am so happy you will be able to get to see a doctor who knows all about Aidan!!! It makes it so much easier!!

Can't wait to hear about your Send Off Party!! I think I am in as much suspense as you are!!! Woooo Hoooo!!! I love surprises, but hate them at the same time!!

 

[Thumper321]

We got our MAW packet today! It has our flight itinerary, our GKTW confirmation, our rental car info., and our budget! We've got the first flight out on Monday morning and the last flight to return on Sunday evening! Our GKTW stay is confirmed and I'll have to attend the orientation at 7:45 the night we arrive. For our rental car, they did get us a van! I was worried about being able to fit all of the kids, our luggage, Aidan's stroller and equipment, etc. But since I drive a van at home, I think that will work. Our budget. . . OMG the budget! We won't get our expense checks until the morning we leave, but the amount is definitely sufficient. We will have to eat most meals at GKTW, but I'm pretty sure we can pull off all of our ADR's on the amount they are giving us. The budget is broke down by "Meals, snacks, taxes, tips", "Airport Parking", "Souvenirs", "Baggage Fees", "Baggage Tipping", etc. We can adjust the spending to fit our needs, but their breakdown seems pretty accurate. We'll probably stick to it pretty closely.

The one thing that I am concerned about is the kids' car seats/booster seats. Our seats on our first flight are in the row behind an exit row. Car seats are not allowed there. We cannot change our seats because of an almost full flight. Booster seats aren't allowed at all. We cannot check the car seats because of the extra cost to MAW to do so. MAW has instructed us to "leave car seats and booster seats at home. The rental car in Orlando will have a baby seat / car seat / booster seat available in your car when you arrive." I also didn't know that Florida doesn't require booster seats or car seats for children 3 and over. That worries me. My 6 year old (38 pounds) and 9 year old (57 pounds) are both too small for a regular seat belt, at least according to TN laws. Anway, we are going to stop by the local Orlando Walmart and pick up two booster seats. I'm trying to decide whether to buy a car seat for Peyton as well. Since we won't be able to check them on the way back home, I'm hoping maybe GKTW might be able to keep them and use them for future families. Has anybody else run into this situation? I asked about it earlier in our planning, but that was before I knew that we couldn't use the car seat on the plane or check it.

Anyway, we have definite travel plans! I am so excited! It won't be long now!

 

[Momofwishkid]

That is so cool! I cant wait to get are packet Im sure it makes it feel so real. Im not sure about the car seats we were thinking of stopping at Wal Mart also and getting at least Caiden (6 years old) a booster. I cant believe Florida's car seat laws. Washington is anyone under 9 years old has to be in a booster. I think Gavin will be OK without one though.