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Old 01-23-2013, 02:59 PM   #121
mommy2mrb
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what fun! love their holiday outfits! and snow too
jealous and happy you get to experience all the new fun magic times!
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Old 01-23-2013, 05:16 PM   #122
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What fun! I love the Mickey ice cream

Jackie
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Old 01-23-2013, 05:33 PM   #123
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Originally Posted by mommy2mrb View Post
what fun! love their holiday outfits! and snow too
jealous and happy you get to experience all the new fun magic times!
You'll soon be experiencing the new limited time magic at DLR!

I agree, I love their outfits too.

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What fun! I love the Mickey ice cream

Jackie
Gotta love the Mickey touches.

The M&G was fun.
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Old 01-23-2013, 06:40 PM   #124
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You'll soon be experiencing the new limited time magic at DLR!

I agree, I love their outfits too.



Gotta love the Mickey touches.

The M&G was fun.
only if they are doing anything...the website doesn't show anything for either one of our trips
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Old 01-23-2013, 07:43 PM   #126
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Spending some fun time tonight catching up on some dis. Oh how it makes me feel good! Love the concept of the Limited Time. The photos of the meet and great were great.

How 's JJ doing with his new meds ? Body adjusting better now? Hearing all the difficulties JJ had over a year ago to how well he is doing now is very impressive. He sounds like an amazing kid with fantastic drive. And Mom and Dad are pretty amazing too!!

You mentioned a few pages back about Special Olympics. I had a coworker whose son participated in bowling and skating. Skating was his main sport. He even competed in China! She really felt that Special Olympics gave her son more independence and confidence in his own ability. Are you going to pursue this?

When is SWW?
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Old 01-23-2013, 08:57 PM   #127
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Spending some fun time tonight catching up on some dis. Oh how it makes me feel good! Love the concept of the Limited Time. The photos of the meet and great were great.

How 's JJ doing with his new meds ? Body adjusting better now? Hearing all the difficulties JJ had over a year ago to how well he is doing now is very impressive. He sounds like an amazing kid with fantastic drive. And Mom and Dad are pretty amazing too!!

You mentioned a few pages back about Special Olympics. I had a coworker whose son participated in bowling and skating. Skating was his main sport. He even competed in China! She really felt that Special Olympics gave her son more independence and confidence in his own ability. Are you going to pursue this?

When is SWW?
Glad you are getting some time to play on the dis.

He is still adjusting to the meds. He's been sleeping 12 to 14 hours a night from them, but since he's not tired during the day doc said to keep the dose there. It's affecting his appetite like the doc expected. He is expecting to see some weight loss. There are still some breakthrough seizures, but they aren't lasting long and they aren't intense. I hope he soon adjusts.

Yes, we are looking into them.

He was invited to a special needs hip hop class. I'd like him to do that for exercise, but it's mostly teens and adults.
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Old 01-23-2013, 11:54 PM   #128
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Just wanted you to know I am still following along! Prayers for JJ! And YOU!
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Old 01-24-2013, 12:55 AM   #129
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Check the Friday before. That's when they have been posting them.
thanks will do!

happy JJ is sleeping better, prayers he adjusts to the new meds soon
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Old 01-24-2013, 08:51 AM   #130
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Just wanted you to know I am still following along! Prayers for JJ! And YOU!
I very much appreciate your letting me know you're here! Always appreciate the prayers.

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thanks will do!

happy JJ is sleeping better, prayers he adjusts to the new meds soon
He has trouble before bed. Once he is asleep he sleeps the whole night. He is so worried that he won't fall asleep or that he will have a nightmare. Last night he wanted to be held tight until he fell asleep. When his 10pm medicine time comes, he insists the whole world has to stop for him to go to sleep. Each minute that passes ushers in a level of panic that you would not believe. That is why the doc increased his 6pm meds, hoping we could start getting through bedtime without panic attacks. They are really hard on all of us, especially since anxiety and stress is one of his seizure triggers.
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Old 01-24-2013, 09:59 AM   #131
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I very much appreciate your letting me know you're here! Always appreciate the prayers.



He has trouble before bed. Once he is asleep he sleeps the whole night. He is so worried that he won't fall asleep or that he will have a nightmare. Last night he wanted to be held tight until he fell asleep. When his 10pm medicine time comes, he insists the whole world has to stop for him to go to sleep. Each minute that passes ushers in a level of panic that you would not believe. That is why the doc increased his 6pm meds, hoping we could start getting through bedtime without panic attacks. They are really hard on all of us, especially since anxiety and stress is one of his seizure triggers.
so sorry he has such anxiety about getting to sleep...hope the new 6pm meds will help with that!
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Old 01-24-2013, 10:20 AM   #132
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so sorry he has such anxiety about getting to sleep...hope the new 6pm meds will help with that!
Thanks, we sure hope so.
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Old 01-24-2013, 10:51 AM   #133
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Originally Posted by lovethattink View Post

He is still adjusting to the meds. He's been sleeping 12 to 14 hours a night from them, but since he's not tired during the day doc said to keep the dose there. It's affecting his appetite like the doc expected. He is expecting to see some weight loss. There are still some breakthrough seizures, but they aren't lasting long and they aren't intense. I hope he soon adjusts.

He was invited to a special needs hip hop class. I'd like him to do that for exercise, but it's mostly teens and adults.
I keep praying that the med levels will level out. I know that it takes some time and it's hard not to be impatient but it sounds like they are starting to do their job.

I can totally see Anakin at a hip hop class. I bet that he'd show up that entire class with his moves.
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Old 01-24-2013, 11:48 AM   #134
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I keep praying that the med levels will level out. I know that it takes some time and it's hard not to be impatient but it sounds like they are starting to do their job.

I can totally see Anakin at a hip hop class. I bet that he'd show up that entire class with his moves.
I appreciate the prayer, thanks. I think they are starting to work.

Well, he's got this dance thing...You see, choreographed dancing doesn't click with him. He likes to free style. And well, his free style is totally free and uninhibited. He'd fit in good at a DIS meet with you and your family.

He is learning a choreographed dance tonight for his Fabulously Funny Fairytales play. They keep him focused, but I've noticed they always give him some time to free style.

I think the hip hop class would be great for him as long as he can learn to take up only his space and not the whole entire dance floor.

It took him all these months to stop pattern walking in the theater. Those rows, those aisles, those patterns. It takes all he has, but he can now sit and wait until it's his turn.
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Old 01-24-2013, 12:20 PM   #135
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I appreciate the prayer, thanks. I think they are starting to work.

Well, he's got this dance thing...You see, choreographed dancing doesn't click with him. He likes to free style. And well, his free style is totally free and uninhibited. He'd fit in good at a DIS meet with you and your family.

He is learning a choreographed dance tonight for his Fabulously Funny Fairytales play. They keep him focused, but I've noticed they always give him some time to free style.

I think the hip hop class would be great for him as long as he can learn to take up only his space and not the whole entire dance floor.

It took him all these months to stop pattern walking in the theater. Those rows, those aisles, those patterns. It takes all he has, but he can now sit and wait until it's his turn.
You tell Anakin that if we meet up in May, I wanna see those dance moves. I might even break out and do my Hammer Time moves for him.

Will you be allowed to take pictures during their practice time tonight? If so, please post them so we can see.
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