Come to the Dark Side...We Have Cookies...(updates 4/3)

[lovethattink]

We tried to think of everything different. The temperatures are up. It's hit 80. The brand switch was another thing. Even sticking to the same brand, when it comes to his seizure meds, we notice problems between lot numbers too. His body is just so sensitive to the chemicals.

There is a drug interaction between his OCD med and the seizure med. That could be a part of it too.

Glad you figured out what was going on with JJ. Hope his adjustment improves.

Happy you guys still went to DHS and had a good time. Sorry he had to use the w/c more but at least you got to get out and have a good time.

We enjoy going to theme parks so I'm glad that we have one about 30 mins away and can have a great time!! Now just trying to figure out if I'll try bringing the kids by myself again!!

Thanks. We had a great time.

I stopped taking JJ by himself to a park a couple years ago. It's just too difficult if something happens in the car, whether it be meltdown, seizure or something else. That's why I'm grateful I found someone to go with us to the science center last weekend. She sat with him. Everything was fine going to the science center, but coming from we were in bumper to bumper traffic. He got bored with his Leap Frog and annoyed. He started kicking my seat and she side-tracked him with games on her phone. Her brother has Autism so she is experienced with knowing when a meltdown is coming on and different techniques on how to calm him and side track him. She is amazing, I didn't have to say a word about kicking my seat and she didn't either. She just stepped in talked to him calmly and showed him what she was doing on her phone.

I hate to hear about the twitching and hand tightening. It sounds like you've got the problem figured out though.

HAPPY EASTER!

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Happy Easter! The tight fist was a new one for us. It was clenched so tight. This morning it was laughter and smiles in his sleep. I turned him on his side though, just in case.

Because my husband has a strong bad reaction to a particular brand of generic (Sandoz), our pharmacy knows not to give it to him. They will actually get it from another local (i.e. competing) pharmacy for him if all they have available is Sandoz. I would ask your pharmacist to stick to one brand of generic and not change.

Although we are all fed the line that all generics are the same, they are not. They use different fillers and they may deliver differently once in the body. Once you find a generic that works, stick with it, don't let the pharmacist switch you around. It truly is easy enough for them to pick up the phone and get what you need quickly from another local pharmacy.

I'm sorry JJ has had to go through this med change. I hope he straightens out quickly.

I had done a CE a few years back on medications for Epilepsy that said that a generic drug could be a certain percentage off from the brand drug. It said that if you switch from a generic that is on the low end to one on the high end that depending on the drug it could be potentially toxic. And on the other hand, switching from a high end to a low end it could be subtherapeutic. And as you mention the inactive ingredients can vary too.

Dh is my pharmacist and that was the only brand available for him to use. He gave me the heads up that it might taste different, but JJ never noticed the different flavor. Next time he won't wait til the last minute to fill it. He'll make sure we stick with the same manufacturer. He does this with the seizure med every time it's refilled.

 

[momabaarjo]

How the heck did I miss a thread change...no wonder why I have missed you. I just thought you were still having computer problems...now I have a lot to catch up on...

Goo-Joseph was just talking about JJ...wondering if he played skylanders...

 

[momabaarjo]

The beast asked you to dance...now how cool is that!

 

[addictedtonostalgia]

I am hopelessly behind but I will catch up later... I wanted to stop by though and wish you all a Happy Easter.

For JJ:

 

[lovethattink]

How the heck did I miss a thread change...no wonder why I have missed you. I just thought you were still having computer problems...now I have a lot to catch up on...

Goo-Joseph was just talking about JJ...wondering if he played skylanders...

This computer is nothing but problems. However, I am here. I need to pop over to your princess thread. I bet you all have made wonderful plans. How's your training going?

The beast asked you to dance...now how cool is that!

Lol, yes.

I am hopelessly behind but I will catch up later... I wanted to stop by though and wish you all a Happy Easter.

For JJ:

Happy Easter. I'll be sure to show him.

 

[momabaarjo]

This computer is nothing but problems. However, I am here. I need to pop over to your princess thread. I bet you all have made wonderful plans. How's your training going?

My training is having a lot of ups and downs...mostly downs but I am determined to run this with Ann.

We make ADRs tomorrow and booked our hotel last month...just have to head over there and check them out. I am hoping that we get a chance to DISmeet again...this time I am determined to do Disney by enjoying my time and NO COMMANDO plans!

I am still trying to figure out how I missed the change in threads...

 

[ladylyons]

Thanks. We had a great time.

I stopped taking JJ by himself to a park a couple years ago. It's just too difficult if something happens in the car, whether it be meltdown, seizure or something else. That's why I'm grateful I found someone to go with us to the science center last weekend. She sat with him. Everything was fine going to the science center, but coming from we were in bumper to bumper traffic. He got bored with his Leap Frog and annoyed. He started kicking my seat and she side-tracked him with games on her phone. Her brother has Autism so she is experienced with knowing when a meltdown is coming on and different techniques on how to calm him and side track him. She is amazing, I didn't have to say a word about kicking my seat and she didn't either. She just stepped in talked to him calmly and showed him what she was doing on her phone.

Luckily the main problem I have to deal with is the meltdowns and the fighting between the kids. That's great you do have someone who can go with you and keep him distracted when other things don't work. We also had bumper to bumper traffic coming home so I can understand the joy of having someone to help. It's also great that she's got experience on how to help calm him down. Now I need to find someone like that!! I may try again but after today with my DH there we still had issues with Jeremy just not listening. That's our biggest fight right now with him.

 

[DMGeurts]

I stopped by to wish you a happy Easter this morning - and I don't see my post... My apologies!!! I hope you had a wonderful Easter.

D~

 

[addictedtonostalgia]

Thanks. Yes, he is getting around much better. Today we went to a museum and he didn't need the wheel chair at all. We left it in the car. We were only there a couple hours and he did fine. He sat down a few times, then kept going. Brings tears to my eyes and joy to my heart with how well he is doing lately.

YAY JJ! Seriously, you must be so proud of him, I am too and I have never even met him. I hope that continues.

So I asked how I could purchase one for JJ. Sandra (ladylyons) worked some magic and yesterday a Star Wars super hero cape, personalized for JJ arrived in the mail! Thank you so much Sandra for working your magic.

I love the cape!! Didn't quote pictures because I didn't want to clog up the post, but it looks fantastic.

I loved all your BOG pictures, we had a great time there. We sat in the West Wing, I can see why JJ wouldn't like it, but we really enjoyed it. I think your picture of the rose is very good, it is pretty difficult to photograph, my pictures all came out terrible. Also, LOVE LOVE LOVE that you got JJ a "celebrating" pin. One month seizure free- what a great reason to celebrate!

Also enjoyed reading about the Ashley Eckenstein (may have spelled that wrong) meet. She sounds like a wonderful person, as does JJ's friend from theater. Sorry that Clone Wars got cancelled

 

[Lilfoot93]

I hope you had a wonderful Easter!! I hope that JJ is feeling better. You can tell him that Trev LOVES his Yoda Easter basket!! That is the only basket Trev wanted to use all weekend for Easter egg hunts He was wearing his Vader hat too and he was getting asked where he got it. He said his friend in Florida gave it to him

Jackie

 

[lovethattink]

JJ has had two good nights!

My training is having a lot of ups and downs...mostly downs but I am determined to run this with Ann.

We make ADRs tomorrow and booked our hotel last month...just have to head over there and check them out. I am hoping that we get a chance to DISmeet again...this time I am determined to do Disney by enjoying my time and NO COMMANDO plans!

I am still trying to figure out how I missed the change in threads...

I checked out your thread and commented. Congrats on getting your ADRS! Sounds like training is going well. Good luck on picking out your outfits and getting the right running shoes. That's incredible that Ann's time got better with new shoes.

Not commando, that should be interesting! I like winging it sometimes.

Don't worry. I'll send you a message next time I change.

Luckily the main problem I have to deal with is the meltdowns and the fighting between the kids. That's great you do have someone who can go with you and keep him distracted when other things don't work. We also had bumper to bumper traffic coming home so I can understand the joy of having someone to help. It's also great that she's got experience on how to help calm him down. Now I need to find someone like that!! I may try again but after today with my DH there we still had issues with Jeremy just not listening. That's our biggest fight right now with him.

Hopefully he'll begin listening. Do the other children follow his lead then?

I stopped by to wish you a happy Easter this morning - and I don't see my post... My apologies!!! I hope you had a wonderful Easter.

D~

Thank you for the Easter wishes! Glad you stopped by!

YAY JJ! Seriously, you must be so proud of him, I am too and I have never even met him. I hope that continues.

That's sweet of you!

I love the cape!! Didn't quote pictures because I didn't want to clog up the post, but it looks fantastic.

Thank you! He's been wearing it every chance he gets. And when he isn't wearing it, it's in my back pack so it's handy.

I loved all your BOG pictures, we had a great time there. We sat in the West Wing, I can see why JJ wouldn't like it, but we really enjoyed it. I think your picture of the rose is very good, it is pretty difficult to photograph, my pictures all came out terrible. Also, LOVE LOVE LOVE that you got JJ a "celebrating" pin. One month seizure free- what a great reason to celebrate!

So glad you got to eat at BOG. Did you go for lunch or dinner?

Also enjoyed reading about the Ashley Eckenstein (may have spelled that wrong) meet. She sounds like a wonderful person, as does JJ's friend from theater. Sorry that Clone Wars got cancelled

Yes, they both are wonderful. Stinks that Clone Wars got cancelled. Disney says they are taking SW animation in a different direction. I hope they explain the near future of SW animation at SWW.

I hope you had a wonderful Easter!! I hope that JJ is feeling better. You can tell him that Trev LOVES his Yoda Easter basket!! That is the only basket Trev wanted to use all weekend for Easter egg hunts He was wearing his Vader hat too and he was getting asked where he got it. He said his friend in Florida gave it to him

Jackie

Thanks. He is feeling better. He's had 2 good nights. The full nights sleep does him so much good!

Glad Trev likes his Yoda Easter Basket. We got JJ the same one. The Vader hat is a regular black hat and Joe had the Vader patch he ironed on it. He made one for himself too. But JJ kind of took it over.

 

[ladylyons]

JJ has had two good nights!



Hopefully he'll begin listening. Do the other children follow his lead then?

That's great!! Hopefully it keeps going!!

Yes they do copy what he does unfortunately. I'm trying to implement a rewards chart but haven't figured out the best way to do it yet. He want's a really, really big Lego set (his words) so I've got to figure out how long he's got to really listen and follow the rules before he get's to go pick it out.

 

[lovethattink]

That's great!! Hopefully it keeps going!!

Yes they do copy what he does unfortunately. I'm trying to implement a rewards chart but haven't figured out the best way to do it yet. He want's a really, really big Lego set (his words) so I've got to figure out how long he's got to really listen and follow the rules before he get's to go pick it out.

Unfortunately, the trend didn't continue. Last night was not a good night for JJ. Twice I was woken up by him having seizures. Each time it was because he was too hot. Ended up having to take blankets away from him and taking off his shirt to keep him cooler. It's only 75 in the house.

Oooooh, what really big lego is he wanting? That's good to have incentive for good behavior.

Too bad they copy, that's got to be hard at times.

 

[lovethattink]

Trying something new​

One of the things I love about Disney is that there is always something new to try. Whether it's an attraction, a food, or even a new restroom.

Yes, I'm talking potty talk now. The new Rapunzel rest area is so nice. I only took pictures of the outside, because the place was crawling with people when we were there and I didn't think it was appropriate to take pictures inside. Hopefully some morning it won't be full. But Jeff Lang and Denise have great video of it from opening day and Onetreehill has fantastic pictures of the area. I only took a few, these are from the our birthday dinner night.

 

[lovethattink]

Not sure if this is new merchandise or just the first time it caught our eye. It's an R2-D2 cooler bag that lights up and makes sound! They also have a Darth Vader one that lights up and "breaths".

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[lovethattink]

Another new thing for us: The Legend of Captain Jack Sparrow

30 minute wait

Flash photography and video taping are not permitted.

Mulch Sweat and Shears performed at the Sorc. Hat, that was a new sight for us.

Both Darth Vader and Darth Maul were doing JTA. Usually we only see this during SWW. There were also lots of show times.

While it's not new, but it does have a new location, we did Character Palooza at Echo Lake. Please ignore the chocolate covered face. JJ was eating ice cream.

Jafar

Pinocchio

Chip

Mary's Penguin

Meeko found the ice cream, my back pack ended up with icecream dripped on it. I didn't notice until later. Dh's vanilla icecream made it look like bird droppings. Good thing it's vinyl. Was an easy clean up. Meeko was a riot. The interaction was so funny.

I think Belle recognized us from watching her show shortly before. She asked JJ what he did that day. He told her about the Tardis he saw on I-4, saw her show, the pirate show, and now this. Not sure what else they talked about but both were pretty animated.

We didn't get to the army man, Mary Poppins, Dale, or Jasmine.

JJ bought himself an Ahsoka car. Dh says these have been out since SWW last year, but it's the first JJ noticed and Ahsoka car.

 

[Moodyzblu]

We are so excited to be seeing the New Fantasyland for the first time .. so I agree, there is always something new and exciting !

Sorry about JJ having seizures .. geesh that just breaks my heart.

 

[missj1975]

Thanks for the update. I had no idea about the Jack Sparrow exhibit. Can't wait to see it in a couple of weeks!

 

[mickeystoontown]

I simply hate to hear that JJ had more seizures. He seemed to have been doing so well.

Yay for all of the new things to do at Disney! Whenever people ask me why we keep going back and haven't we seen everything there is to do, I tell them that there's always something new to see and do.

JJ and Belle look like they were having a long conversation and, like you said, Belle was so animated. I love it when characters really get into, well, character, with the guests.

 

[lovethattink]

We are so excited to be seeing the New Fantasyland for the first time .. so I agree, there is always something new and exciting !

Sorry about JJ having seizures .. geesh that just breaks my heart.

The New Fantasyland is so amazing. The detail is incredible.

I hate seizures. He's very tired. He said he feels fine but is too tired to get out of bed. I'm letting him sleep it off and get up at his own pace today.

Thanks for the update. I had no idea about the Jack Sparrow exhibit. Can't wait to see it in a couple of weeks!

The Jack Sparrow exhibit is interesting. I could be wrong, but I think James Arnold Taylor did the voice of Jack Sparrow for it. There is a preshow area then the show area. It's a very short presentation. I thought it was going to be about the making of the movie, but I was wrong. I don't think it was worth the 30 minute wait, but I'd definately do it again if it was 15 min or less. It's not because of the quality of the show, but it was because of how short the show seems. Kind of like the Peter Pan attraction. I love that attraction but it's over in no time.

I simply hate to hear that JJ had more seizures. He seemed to have been doing so well.

Yay for all of the new things to do at Disney! Whenever people ask me why we keep going back and haven't we seen everything there is to do, I tell them that there's always something new to see and do.

JJ and Belle look like they were having a long conversation and, like you said, Belle was so animated. I love it when characters really get into, well, character, with the guests.

He was doing so well. I feel disappointed that he had them last night. He started at play practice on Monday to get an aura, but nothing more came of it. He came to us as soon as he felt it coming on and we got him hydrated and away from the class until he felt himself. Again, he was all sweaty and had been acting silly with the class mates.

I appreciate your concern and prayers. I know you know exactly what it's like.

We've lived here since 2000 and still haven't done everything.

He and Belle had a great interaction!

JJ has made his debut. He feels good.