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Old 01-12-2013, 11:33 AM   #76
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Hi, I am back. I would say I am better but not completely.

Great steps for Anakin. It has got to be hard to start over but it sounds like he is doing great! Good for him!
So nice to see you back!!

I'm glad you are doing better. It takes time. Anakin is still coughing up a storm at times.
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Old 01-12-2013, 06:50 PM   #77
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What about wrapping the bottles or fan in foil to help keep the water cool. I know I always did this when I'd take my lunch in school to keep my drink cold. It worked really well!
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Old 01-12-2013, 07:00 PM   #78
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What about wrapping the bottles or fan in foil to help keep the water cool. I know I always did this when I'd take my lunch in school to keep my drink cold. It worked really well!
That could work.
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Old 01-15-2013, 10:36 PM   #79
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I have not been able to get you off my mind all day. Praying all is well!

Tell JJ we said hi!
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Old 01-16-2013, 07:21 AM   #80
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I have not been able to get you off my mind all day. Praying all is well!

Tell JJ we said hi!
Yesterday was JJ's neurologist appointment. He was pleased with the current seizure control and noted that the cooler weather is better for that.

We talked about the heat and humidity and living in Florida. He said once the temps rise a little more we need to get him him where he's going and not linger outside.

We talked about Buddy Baseball starting soon and how late afternoon practices are too hot as the spring approaches. Games are early in the morning, so games will be fine as he can tolerate.

The neuro was interested about the theater troupe with unique abilities, since theater is so beneficial and it's in the air conditioning.

After the appointment we stopped at DTD. It was Earl of Sandwich for lunch and Goofy's Candy Co. for dessert. We found larger Mickey molds so Jj and his dad can make larger Mickey soaps!

Another opportunity may be presenting itself soon, Special Olymipics. Since he can't do any outdoor sport, bowling was suggested. Apparently he can compete as an independent? I will be looking into more information. But bowling alleys are always freezing!!
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Old 01-16-2013, 07:46 AM   #81
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I cancelled our reservation at Pop Century. We just couldn't figure out how it would work with needing icepacks and not having a freezer.
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Old 01-16-2013, 08:19 AM   #82
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I cancelled our reservation at Pop Century. We just couldn't figure out how it would work with needing icepacks and not having a freezer.
I thought that for medical reasons they would either provide a freezer or allow you to store them in a freezer in the main building. Did you ask?
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Old 01-16-2013, 08:19 AM   #83
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sounds like anakin's appt went well! bowling would be a fun activity for him and how wonderful if he gets to be a part of the Special Olympics

bummer about canc your POP stay, hopefully the driving back and forth will be doable!
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Old 01-16-2013, 08:49 AM   #84
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I thought that for medical reasons they would either provide a freezer or allow you to store them in a freezer in the main building. Did you ask?
No, I did not look into that.

But it makes our August/Sept stay at CSR all that much special.

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sounds like anakin's appt went well! bowling would be a fun activity for him and how wonderful if he gets to be a part of the Special Olympics

bummer about canc your POP stay, hopefully the driving back and forth will be doable!
They explained to me that usually people do it through their school. But he is enrolled at a private school but taught at home, so that complicates things a bit. Keep your fingers crossed. If the door gets shut this year, then we'll wait until the right doors open.

Hopefully the drive back and forth won't have to happen each day. Maybe friends will let us stop by? Dh has a relative who lives closer to Disney than us. She's a snowbird, but the house is there year round, maybe something can be worked out? Then there are off site motels villas or suites. We will keep all options open.
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Old 01-16-2013, 12:08 PM   #85
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Good news on the Neuro front. The heat IS a bear, you and I both have talked about that so much. Sorry about Pop, but you are SOI RIGHT, PLENTY of options, Disney doesn't have the market on rooms and some places are VERY convenient. A snowbird aunt...does she ever rent the place out? and woohoo for CSR in Aug/Sept! I had looked the Mickyard (is that the correct terminology?) up and what a great deal!

You will make the opportunities available to JJ, we are both good at finding what our children need and pursing things till they work. So proud of you Michelle!
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Old 01-16-2013, 12:16 PM   #86
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Good news on the Neuro front. The heat IS a bear, you and I both have talked about that so much. Sorry about Pop, but you are SOI RIGHT, PLENTY of options, Disney doesn't have the market on rooms and some places are VERY convenient. A snowbird aunt...does she ever rent the place out? and woohoo for CSR in Aug/Sept! I had looked the Mickyard (is that the correct terminology?) up and what a great deal!

You will make the opportunities available to JJ, we are both good at finding what our children need and pursing things till they work. So proud of you Michelle!
Thanks for the round of encouragement.

The airconditioner fan from Amazon came in today. Didn't try it yet. But my fingers and toes are crossed that we have better success than you did with your two.

She does not rent the place out, but perhaps she will in the future. They are able to come down for less time every year. It's very tiny. Enough room for 2 people though.
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Old 01-17-2013, 06:20 AM   #87
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HI!!! Found my way over....marking my spot and going back to read and catch up.
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Old 01-17-2013, 06:27 AM   #88
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HI!!! Found my way over....marking my spot and going back to read and catch up.
So glad to have you here.
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Old 01-17-2013, 06:42 AM   #89
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There are some changes coming to Disney that may or may not affect our trip.

FP+ is one of the new technologies rolling out soon. I've been folowing the rumor theads here and on other boards.

And yesterday the DIS published this blog about GAC and the possible changes dueto FP+ http://www.disunplugged.com/2013/01/...-battle-begin/

I saw Debbie and a few other friends commented on there. I considered commenting, but I think I would just be repeating what I already said in this thread http://disboards.com/showthread.php?t=3034734

The only comment I'd like to add, is that I think it would be very beneficial for Disney to take a lesson from Universal on how their Attraction Assistance Card works. We were able to beat the heat much easier at IOA and Universal than at Disney. He came out of the parks less exhausted.

At Universal, they linked his information to their databass. His card has a bar code that is scanned every time he goes on an attraction and the card is turned in every time we get a new one.

When we arrive at an attraction I take his card to the ride attendant. If it's less than a 30 minute wait they send us to the appropriate queue. If it's more than a 30 minute wait, they write a return time on the card.

We were able to hang out in the air conditioning until his return time. He stayed cool and it was so much less stress on his body. There were only two attractions he could ride at Universal, Minion Mayhem and Shrek. They were the only ones with stationary seats. He loved them, especially the dance party with the minions afterwards.

Disney give him so many more options since there are so many calmer attractions.


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Old 01-17-2013, 08:48 AM   #90
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Quote:
Originally Posted by lovethattink View Post
There are some changes coming to Disney that may or may not affect our trip.

FP+ is one of the new technologies rolling out soon. I've been folowing the rumor theads here and on other boards.

And yesterday the DIS published this blog about GAC and the possible changes dueto FP+ http://www.disunplugged.com/2013/01/...-battle-begin/

I saw Debbie and a few other friends commented on there. I considered commenting, but I think I would just be repeating what I already said in this thread http://disboards.com/showthread.php?t=3034734

The only comment I'd like to add, is that I think it would be very beneficial for Disney to take a lesson from Universal on how their Attraction Assistance Card works. We were able to beat the heat much easier at IOA and Universal than at Disney. He came out of the parks less exhausted.

At Universal, they linked his information to their databass. His card has a bar code that is scanned every time he goes on an attraction and the card is turned in every time we get a new one.

When we arrive at an attraction I take his card to the ride attendant. If it's less than a 30 minute wait they send us to the appropriate queue. If it's more than a 30 minute wait, they write a return time on the card.

We were able to hang out in the air conditioning until his return time. He stayed cool and it was so much less stress on his body. There were only two attractions he could ride at Universal, Minion Mayhem and Shrek. They were the only ones with stationary seats. He loved them, especially the dance party with the minions afterwards.

Disney give him so many more options since there are so many calmer attractions.


I saw the links last night on the DLR forum....hope the new FP+ doesn't mess with using the GAC ...sounds like Universal has a much better system! DLR is so far behind WDW with the FP...they are now just implementing the strict return time!
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