Come to the Dark Side...4 Weekends of Fun with the Force(Updated 11/12)

[mommy2mrb]

Last week was absolutely horrible. His tics were so severe. Wednesday night another medicine was added to try to lessen the severity of the tics. Friday he went for another VEEG. The added medicine must be doing it's job because he has had very few tics since. And those weren't even close to the intensity of Wednesday's and Thursdays. So it looks right now, like he's on the right combination of medication.

Things were so good this weekend that our stay at CSR went well. He even got to swim today with a life jacket on. Last week, I didn't think that would be a possibility this weekend. Granted it wasn't for long, but he had so much fun with the time he was able.

wonderful the new med has made a difference praying JJ continues to improve!

happy you all had a fun time over the weekend!

 

[lovethattink]

wonderful the new med has made a difference praying JJ continues to improve!

happy you all had a fun time over the weekend!

Thanks. We certainly made the best of what we could.

 

[lovethattink]

Praise God! I hope that this new combination continues to lessen the tics. I can' hardly wait to see how the trip went.

The new combination was working like a charm until Thursday night. He had very strong, nasty tics on Thursday evening after suppressing them at theater practice. He eventually got exhausted and fell asleep. His night was a little restless. Then yesterday when he woke up, they started full force again. I swear when he has those tics he has the strength of 10 people.

After yesterday, I want him to relax and take it easy today. Hopefully we won't have another day of repeat. I also would like to finish Day 5 of SWW.

The TR for the car shows will be short but sweet since we spent most of the time in the room. The best part of the trip was that it was that all four of us went.

 

[lovethattink]

Day 5

We left off with the parade and motorcade. After that we headed to “our” spot at One Man’s Dream to cool off. A few minutes under the fan did the trick. There was time for us to get to the noon show of Behind the Force: Star Wars Voices.
As soon as we found a spot to sit, JJ was looking for David in the VIP section. He didn’t see him and was worried about him. I assured him that David was just fine wherever he was. I told JJ, he was probably working at the Her Universe area at the tent. That satisfied him and he worried less.
The show began. My goodness, Jim Cummings is funny and talented!!

​

There is a part in the show where 3 children are picked to make sounds. Jim Cummings chose the three children. One of the children he chose was his daughter.

And another was JJ!!!!







​

JJ was told to sound like Darth Vader. Then the techs either alter it or play Darth Vader’s voice/breathing.

​

He knew this was coming, but it still surprised him.

Adults were then picked to do the voices on stage. And JAT and Jim Cummings had a go at it.

​

We were one of the last to leave the building. We went out a side exit that looped around to the front exit. We weren't paying attention and were looking at the line for the M&G to our right. To our left, we were surprised by a hello. It was David Eckstein. He took the time to tell JJ what a great job he did as Vader. He said he didn't know he had that in him. JJ was on cloud 9.

He was too tired to stay at SWW. We picked up a quick lunch and headed back to the resort to rest, with plans to come back for the Hoopla.

JJ had insisted he bring his stormtrooper costume. He saw it hanging in the closet and begged to wear it the next day. There was no way with the heat that was a possibility. A compromise was in the making and we told him he could wear it for a little tonight when we go back. We’d try to get back in time to see a character in Darth’s Mall. That way he’d be in air conditioning in his costume. The rule was he could wear his costume if we were in the air conditioning, but he had to take it off for Hoopla.

We got to the tent and as we approached they queue was closed. 

He walked around the tent and ate up the attention. He stayed in character too. And he tried not to laugh at all the questions, “Aren’t you a little short for a stormtrooper?”

By the time we left the tent, the temp had cooled down a bit. We let him wear the costume to pose for some pictures. We headed to the SWW backrounds for pictures. Along the way person after person would stop the w/c and ask if he would pose for a picture with them. At first he thought this was the best thing in the world. He was more than happy to oblige. But as we headed towards pixar place, and he was stopped over and over, it began to wear on him.

​

He was more than ready to take off the costume before the Hoopla. People continued to ask him to pose for pictures. He said that now he understands how Ashley and Dave feel. He said he will never bug them again. He said it's ok when a few people ask, but over and over again it got very tiring. He left with a new appreciating for the patience and kindness that the Ecksteins have showed him.

And Hoopla

​

Once again, this was declared the best day ever.

 

[mommy2mrb]

what a wonderful day!!! so cool JJ got picked to play "Darth" and he looks awesome as a storm trooper, love the photos!
hope JJ is having a great day!

 

[kaoden39]

Michelle,

It sounds like JJ had a great time! It also sounds like he learned something that a lot of adults haven't learned. He is very wise. It did look the best day ever from my seat!

 

[momabaarjo]

Sounds like the best day ever in my book...I love the storm trooper costume!

I got a little smile at your little cooling off location...One Man's Dream...thanks to it (and your boys)...I was left holding FP to TSM one night! But secretly, I want to go back and really enjoy One Man's Dream!

 

[pwdebbie]

What a wonderful day for your son. I am really impressed with the Ecksteins (not that I know anything more about them other than what you have said here). It is good that you document all these days here -- one day you will be able to go back and re-read them all with him.

 

[sl_underwood]

Great update. Praying for your dad and jj.

 

[lovethattink]

what a wonderful day!!! so cool JJ got picked to play "Darth" and he looks awesome as a storm trooper, love the photos!
hope JJ is having a great day!

That day was filled with fun memories. He was thrilled to be picked. This will be the only show where he was picked.

He's hoping MNSSHP is a cool night so he can dress as a storm trooper.

Thanks.

Today he is having a great day. He's had a bunch of tics today, but none that lasted very long. A few were nasty, but most were little ones.

 

[lovethattink]

Michelle,

It sounds like JJ had a great time! It also sounds like he learned something that a lot of adults haven't learned. He is very wise. It did look the best day ever from my seat!

Yes, he had a great time. And a really good learning experience for him.

 

[lovethattink]

Sounds like the best day ever in my book...I love the storm trooper costume!

I got a little smile at your little cooling off location...One Man's Dream...thanks to it (and your boys)...I was left holding FP to TSM one night! But secretly, I want to go back and really enjoy One Man's Dream!

Oh Tammie, I still feel so badly that thanks to our advice to your DH you all missed your ride.

However, I am glad your husband got bit by the Walt bug and wanted to learn more about him!

 

[lovethattink]

What a wonderful day for your son. I am really impressed with the Ecksteins (not that I know anything more about them other than what you have said here). It is good that you document all these days here -- one day you will be able to go back and re-read them all with him.

After how things have been the last few weeks here, writing about and looking at the pictures has been a really nice trip down memory lane. I know there are more good times to come, we just have to take things very slow again. I won't take those good days for granted and cherish them in my heart.

 

[lovethattink]

Great update. Praying for your dad and jj.

Thanks. And thanks for the prayers. I sure wish I could be there with my dad. In fact, we were to go on vacation up there soon. But with JJ's change of condition, we are going to have to try for next year, I guess.

 

[jane2073]

I am so sorry things have been so rough. I am still praying for JJ.
I am really enjoying the trip report!

 

[ladylyons]

Sorry to hear the tics are still occurring I was really hoping the medication had worked.

OMG! JJ is the cutest storm trooper ever!! Looks like another fun filled great day!! No wonder it was the declared the best day ever again.

Sorry I haven't been here. Been busy getting things ready for James and Sarah's birthday party yesterday, Jeremy's first Cub Scout meeting tonight, Girl Scout stuff on Wednesday and we found out we're having another BOY!!! Sarah wasn't too happy with that news but I think she's ok now. Hoping to stay caught up now.

 

[lovethattink]

Yesterday was filled with activity, fun, and tics. Guess we just have to accept it as par for the course.

Our day started with JJ having full body tics that were very strong. We gave him space because if we get too close we could get kicked or hit. I think the excitement of classes resuming and going for blood work at the crack of dawn added stress on him.

He had voice lessons then theater yesterday. The door opened from the room during his lesson and out came he with a beat red face and his teacher looking extremely concerned. It was a throat tic. He couldn't breath. He was walking over to me. All I could envision was him passing out and hitting his head on the wall or floor. So I ran over to him and had him sit down on the ground. As soon as he sat down he began breathing again and his legs began to tic. Once he stopped kicking, he went back into class as if nothing happened and finished his lesson. His teacher said he is quite the trooper.

The exact same thing happened at theater lessons. Since the theater class isn't a private class like the voice lesson, I stayed near him. When I noticed him starting to tic, I took him to a dressing room and he let it all out. Once he was done he joined back in. The rest of the class he was fine.

One more time yesterday, he had this exact same type of ticking occur. It was last night while we were watching Star Wars Episode 1. His face turned beat red and he couldn't breath then it went into leg tics just like earlier.

I am so sorry things have been so rough. I am still praying for JJ.
I am really enjoying the trip report!

Thanks, appreciate the prayer. Seems every day has its ups and downs.

Thanks!

Sorry to hear the tics are still occurring I was really hoping the medication had worked.

OMG! JJ is the cutest storm trooper ever!! Looks like another fun filled great day!! No wonder it was the declared the best day ever again.

Sorry I haven't been here. Been busy getting things ready for James and Sarah's birthday party yesterday, Jeremy's first Cub Scout meeting tonight, Girl Scout stuff on Wednesday and we found out we're having another BOY!!! Sarah wasn't too happy with that news but I think she's ok now. Hoping to stay caught up now.

I am still holding out hope that these tics are just transient and will soon go away.

Lol, thanks. He just loves that costume.

Sounds like you have been having lots of fun with the kids. Happy bday to James and Sarah. Do you have a picuture of Jeremy in his uniform? Wow both a cub scout and girl scouting.

Congratulations! I'm sure Sarah will just love her little brother. Whew, all that testosterone in the house. I know what it's like to be outnumbered, lol. I always wanted a little princess since I'm so prissy. But I'm so glad I have boys. I can't imagine it any other way.

 

[ladylyons]

I am still holding out hope that these tics are just transient and will soon go away.

Lol, thanks. He just loves that costume.

Sounds like you have been having lots of fun with the kids. Happy bday to James and Sarah. Do you have a picuture of Jeremy in his uniform? Wow both a cub scout and girl scouting.

Congratulations! I'm sure Sarah will just love her little brother. Whew, all that testosterone in the house. I know what it's like to be outnumbered, lol. I always wanted a little princess since I'm so prissy. But I'm so glad I have boys. I can't imagine it any other way.

I'll keep hoping and praying that they just go away for him too. He does sound like a trooper with how he was able to go back to his lessons after the tics.

Yeah it's been a very busy last few weeks. Once the kids were back in school I went into full cleaning mode. I'd put the Disney Channel on for James and he'd play in the living room. I did some deep cleaning since it's been a while since I've done that.

I do have a picture of Jeremy the morning of his first Cub Scout meeting. They don't have to wear the pants and it was just too hot for them anyways!! We've been in the 90's - 100's the last few days.



I would have loved another princess but at the same time it'll be nice to just have the one. She is pretty demanding at times and I don't think I could handle 2 of her! I'll ask her again in the next few days how she feels. Yeah I'm just afraid of when they are all teenagers!!! Going to eat me out of house and home!!!

 

[lovethattink]

He looks so sweet and adorable in his uniform. Sounds like it's hotter by you than by us. Though my swimming pool water feels like bath water.

 

[mickeystoontown]

JJ is such a strong little man to be able to get through the tics and still go back to the classes or to what he was doing before. I'm super proud of him. Of course, I'm still praying that the doctors can come up with the right meds to make the darn tics stop completely. I know that they are scary for both you and for JJ.