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

[annmarieda]

I knew I was behind, but WOW... I am sorry it was as much as it was.

I am so sorry that JJ has had the struggles with Tics and Teeth... That poor boy! I keep him in my prayers.

You said passholder discounts are out for october? I am lost. I thought it was only until 9/26.

I am amazed at all the m&G's you get to do durning SWW. I had no idea that so many were offered. I mean... it makes sense of course, but it is just so cool that there always seems to be something at WDW that I have yet to discover.

My dd has been trying to get us to watch Dr. Who. Is it a safe show? It would be kinda nice to have something to watch with Zoe.

A 2015 trip to DLR? You will definitely have to let me know if you make it to the west coast!

I am a tad sad to not have a child with me on the trip next month because Wilderness Explorers sounds like a fun thing to do in AK. I will have to put that on my to do list for January!

How frustrating to have to get the meds situation straightened out! Sounds like you had a good enough night recently though to at least give you all a break and catch up on some sleep.

Oh MY!!! That is truly wonderful that JJ was able to be out of his stroller for the parade!! I can certainly understand why this would stir emotions in you!

It sounds like things are gradually looking up. I hope this week proves to be wonderful for you all!!!

 

[WDWRids]

The photos of the parade are amazing! JJ looks so content and happy marching in the parade. Brought tears to my eyes - especially to read how it affected you. How cool that he was with the celebs kids!! You really did get a good dose of pixie dust for this visit.

Not sure if you wear headbands but saw these and thought of you. Plus some of the others on your thread that attend the Star Wars events might love....

https://www.etsy.com/shop/ElegantlyGeek?ref=pr_faveshops

Really cute!!

Hoping the weekend was a good one!

 

[lovethattink]

Yesterday was JJ's appointment. Doesn't look like there is a quick cure-all.

I knew I was behind, but WOW... I am sorry it was as much as it was.

I am so sorry that JJ has had the struggles with Tics and Teeth... That poor boy! I keep him in my prayers.

It hasn't been easy, but he doesn't complain or cry.

You said passholder discounts are out for october? I am lost. I thought it was only until 9/26.

They are no longer listed on the website. I know when I called, reservations that day, the cm couldn't pull up what was seeing. Maybe it was put up by accident?

I am amazed at all the m&G's you get to do durning SWW. I had no idea that so many were offered. I mean... it makes sense of course, but it is just so cool that there always seems to be something at WDW that I have yet to discover.

There are so many characters during SWW.

My dd has been trying to get us to watch Dr. Who. Is it a safe show? It would be kinda nice to have something to watch with Zoe.

Dr. Who is another addictive Sci Fi show. There are many times where JJ needs to have the channel changed because he's scared or apprehensive. He hated the alien episodes, but loved the daleks. We've laughed, we've cried with the show. Most of it, I've seen on DVDs when he was asleep. Goofy has one season downloaded on his phone and watched it that way. I'd suggest you watch it first and see what you think.

A 2015 trip to DLR? You will definitely have to let me know if you make it to the west coast!

If we plan to go, I'll be sure to let you know. At this point we haven't bought tickets or even thought of plans. Things aren't going too well with JJ. Today, there is no way he could travel too far.

I am a tad sad to not have a child with me on the trip next month because Wilderness Explorers sounds like a fun thing to do in AK. I will have to put that on my to do list for January!

There were plenty of adults doing it without kids.

How frustrating to have to get the meds situation straightened out! Sounds like you had a good enough night recently though to at least give you all a break and catch up on some sleep.

It's still not straightened out.

Oh MY!!! That is truly wonderful that JJ was able to be out of his stroller for the parade!! I can certainly understand why this would stir emotions in you!

It sounds like things are gradually looking up. I hope this week proves to be wonderful for you all!!!

That parade was very special! Today he wouldn't have been able to do that. He lost control of his legs a half dozen times today.

It seems like we are always adjusting to a new normal. I'm going to celebrate the good days.

Since Saturday it's been a bit bumpy here.

The photos of the parade are amazing! JJ looks so content and happy marching in the parade. Brought tears to my eyes - especially to read how it affected you. How cool that he was with the celebs kids!! You really did get a good dose of pixie dust for this visit.

Not sure if you wear headbands but saw these and thought of you. Plus some of the others on your thread that attend the Star Wars events might love....

https://www.etsy.com/shop/ElegantlyGeek?ref=pr_faveshops

Really cute!!

Hoping the weekend was a good one!

We certainly did get a good dose of pixie dust!

Thanks for the link. We have all of that Star Wars material. I'm going to have to figure out how to make headbands myself.

 

[mickeystoontown]

Popping in to check in on my little friend JJ.

 

[ladylyons]

Yesterday was JJ's appointment. Doesn't look like there is a quick cure-all.

Sorry to hear that. Continued prayers for JJ!

 

[momabaarjo]

What a great parade for JJ (and you)!

 

[mommy2mrb]

This week is going to be a good one. Tomorrow Grumpy comes home from his vacation up north. He has to get books for school this week. Classes start next week. JJ has two appointments this week. One with the neurologist to get the results of the blood work. Another to get an OT evaluation. Then they'll be able to start helping him!

We started school work in July. Now he's getting into learning new things instead of review. This has produced some stress and he gets some really nasty tics during his lessons. Not because he can't do the work, but because he is worried it's going to be hard. They also seem to show up when he is completely relaxed. The medicine, diet, and supplements are definitely helping because they aren't lasting near as long. Just seconds compared to the minutes they were lasting. I still hate it that he gets the choking ones. He hates the one where he hyperventilates out of his nose. He's tried a couple times to stop it by holding his nose and opening his mouth, but then he couldn't breath at all once he let go of his nose. We've encouraged him to just go with the flow and not fight it. It seems to go much better when he stays relaxed.

Yesterday he was so excited to talk to his brother on the phone that he started ticking. His tongue kept flicking in and out of his mouth the whole conversation and a little afterwards.

He starts voice lessons back up in a couple weeks. This could prove interesting. I'm hoping that he won't tic for those 30 minutes. His special needs theater also starts back up the same week. The are doing a musical this time. But it hasn't been revealed to us what musical.






Hey, stranger! Welcome back from Boston and all your summer activities. When does Megan start school? Glad you found some time to post. JJ has been back to school work since July.

Dh said the sundae was as good as it looks.

His head was certainly held high.

JJ's doing a little better. Grumpy comes home tomorrow from his month long vacation. We miss him and he says he is definitely ready to come home.

Wow, under 100!

Yesterday was JJ's appointment. Doesn't look like there is a quick cure-all.




That parade was very special! Today he wouldn't have been able to do that. He lost control of his legs a half dozen times today.

It seems like we are always adjusting to a new normal. I'm going to celebrate the good days.

Since Saturday it's been a bit bumpy here.

been a busy time since we got back from Boston...had such a wonderful time! Megan is finally all set for back to school - she starts 8th grade on 9/4 and new dance schedule 9/9...going to keep me busy plus have 3 new volunteer "jobs" I'm taking on....design team member at my local scrapbookstore, treasure for Megan's performance team and also for her choir booster club.


sorry you didn't get better news at the doctor, praying hard the new treatments, etc will help JJ more and he can enjoy his new classes!

enjoy having Grumpy home, good luck to him with his new classes!

 

[lovethattink]

Today has been a tough one. All of his tics today have involved his full body. And he's had lots of them. Right now things have calmed down. So he's playing video games and I thought I'd hop on the computer. Hoping to get an update in too.

Sorry to hear that. Continued prayers for JJ!

Thanks. Appreciate the prayer.

What a great parade for JJ (and you)!

Yes!!

been a busy time since we got back from Boston...had such a wonderful time! Megan is finally all set for back to school - she starts 8th grade on 9/4 and new dance schedule 9/9...going to keep me busy plus have 3 new volunteer "jobs" I'm taking on....design team member at my local scrapbookstore, treasure for Megan's performance team and also for her choir booster club.


sorry you didn't get better news at the doctor, praying hard the new treatments, etc will help JJ more and he can enjoy his new classes!

enjoy having Grumpy home, good luck to him with his new classes!

I'm so excited for Megan to start school and the new dance schedule. I love that her passion for dance is growing.

3 new volunteer jobs?! You are going to be one busy Mama.

 

[kaoden39]

Michelle,

I am praying for you all.

 

[annmarieda]

I am so sorry he took a turn for the worse. I understand adjusting to new normal... it can kinda stink. Wish that normal were just a tad closer to what others have as normal.... but isn't it funny how our kids who truly have reason to complain, don't?

Know you and JJ are in my prayers.

 

[lovethattink]

Michelle,

I am praying for you all.

Thanks, Michele. I appreciate it. Thanks for being there for support yesterday.

I am so sorry he took a turn for the worse. I understand adjusting to new normal... it can kinda stink. Wish that normal were just a tad closer to what others have as normal.... but isn't it funny how our kids who truly have reason to complain, don't?

Know you and JJ are in my prayers.

It stinks, but what can you do? If we don't make the best of it; then things seem even worse. I guess they've come to accept the challenges and changes their condition brings.

Popping in to check in on my little friend JJ.

Oh Lisa, your little buddy had a very bad day yesterday with his tics. Hopefully today will be much better!

 

[momabaarjo]

Wish there was someway I could reach out and give you a big hug! JJ is such an amazing boy and should not have to deal with this! God has a purpose...faith, trust (and a little Disney pixie dust, too).

 

[lovethattink]

I Believe It Happened for a Reason; Why Are So Many Children Crying? We're at the Happiest Place on Earth.​

This is not a SWW update, but another "day TR inside the TR. Last Saturday we all felt the need to get out of the house and go to the MK. In the morning I made reservations for Liberty Tree Tavern for 12:30pm.

11am came much too quickly and we were not out of the house to I had to change our reservation time. I called DD and changed it to 2pm.

JJ was really doing great. He had a few little tics here and there. The car ride went great.

We arrived at the TTC and took the ferry. There were no benches left to sit on, so we headed to the "front" of the ferry and stood by a pole. Beside us was an empty double stroller. One of the children beside us wanted to be held. Parents refused, place her in the double stroller; and this child screamed bloody murder the entire ferry ride. I got out JJ's ear phones and he wore them. This little girl had a great set of lungs and endurance.

Our first stop once inside the MK was to the Fire Station to get SotMK cards. Our starting spot was Tortuga Tavern. The cm warned us that Tortuga was experiencing problems. That if we encounter any to stop back and they'll change our location. We should have just had them change the location right then and there. But didn't.

Walking past the CP, we heard an announcement that Dream Along with Mickey was not going to be presented at that time. Some of the characters did come out for M&G though I'm not sure which.

We got to Tortuga Tavern. The air conditioning back where the portal is, felt so good. The portal worked for the people in front of us. It was our turn and the portal didn't work at all. We tried several times and got the same response. So we headed back for help. Stopped at the SotMK stand behind the Christmas Shoppe and they redirected us to Frontierland. JJ was able to do two portals before it was lunch time.

We arrived at LTT and got seated almost right away. The little girl at the table behind us began to wail and scream. I have no idea what was going on. They didn't speak English. But this little girl was not happy. Next thing we know everyone at that table left. No word to anyone. The server didn't know if they went out to calm the child down, or completely left. Not too long afterwards, someone else was seated at that table.

The chef came to our table to discuss allergies and intolerances. JJ was able to get the turkey with no gravy, french fries, and apple slices. Dh and I both got turkey dinners as well.

JJ loves ketchup, but he can't have Heinz ketchup right now because it has high fructose corn syrup. I had brought a small container of the "new" Hunts Ketchup clearly labled on the package with no high fructose corn syrup.

(Totally OT, the old formulations of Hunts were $1 a bottle at Walmart to get rid of them. I'm sure they flew off the shelves quickly at that price. We didn't get any because those had high fructose corn syrup.)

​

Our server was awesome. She had a whole bunch of tables and was equally attentive to all of them.

After lunch, we went back to playing SotMK. JJ did a couple more portals. We passed by so many crying children. One of the next portals took us over towards the shooting gallery. He picked up a gun and it was ready to go without having to put in money. He had so much fun shooting targets and seeing what they do. Not sure if this was a random act of pixie dust from Disney for a guest or a guest for a guest? Whichever, it was fully appreciated!

JJ has been searching everywhere throughout the house for loose change. He has a little tube that he's filled with them for the next time we go to MK.

Another portal or so and the round and our SotMK game was over. He was a Master Sorcerer once again and his rating was Gold!

​

He wanted to continue playing, so we went behind the Christmas shoppe to get his pack of cards for finishing the game and to get set up for the next game. JJ asked the cm about the gold status. He made a really big deal about it to JJ. Told him he was ranked the highest you can get. It made JJ feel very special. He asked JJ if he'd like to move up a level. JJ was so excited. For as long as we can remember it's been stuck on level one for everyone. I asked if we could play in Fantasyland since the parade was about to start. He said that would be no problem. He moved us up to the next level, starting at Fantasyland and handed JJ the cards for finishing the 1st level.

Instead of one pack of cards, he was given a bunch of cards. I asked the cm if this was bonus or something. And he said with a big smile, "something like that." We walked away and JJ looked at the cards. I thought maybe there were 3 packs of cards since there were three of us. But no. There were 5 sets of cards! Talk about getting some pixie dust!

He played one round in Fantasyland and the next portal had us going to Frontierland. JJ wanted to stop at the SotMK stand to thank the cm for all those cards, but he wasn't there anymore.

I suggested we find airconditioning because it was very hot. JJ insisted he was fine and wanted to head to Frontierland. Instead, we stopped inside the Christmas shoppe to try to cool down. JJ changed his toon. He wanted to go home instead of play another round. We started to head to the exit of the park via the stores. We got through Casey's Corner dining area and into the next store, when JJ said he needed to talk to me.

He said, "Mom, I need room, I'm going to tic and it's goint to be a big one." We turned around and back tracked over to first aid. He started ticking a little. There was one family ahead of us, they were looking for the baby care center and went to first aid by accident. The cm got us in a room and JJ let loose. His legs kicked wildly. His hands and arms flailed. He hyperventilated. I went out and asked if they had any ice. All this movement had him sweating jellybeans. Two different cms went for ice. One came back with a little ice pack and wet cloths. She asked if we needed any further accommodations for our day at the park. We thanked her and told her once he calms down we are leaving the park. The other cm came back with a huge ice pack.

Once he calmed down, we got ready to leave. They said we could take the wet cloth and icepacks with us. We exited the park. Headed towards the monorail only to find out it was closed. So the ferry it was. We tried to park him where there was room for him to tic if he had to. But he was fine for the ferry ride and to the car. The ice lasted the whole way. Once he was in the car, we dumped the water from the ice. There were only a couple ice cubes left in the ice packs, the rest was water.

I truly believe that everything happens for a reason. Thanks to stopping at First Aid we had the wet cloth and icepacks for the hot ferry ride and walk to the car.

 

[wiigirl]

Great update!

 

[mommy2mrb]

sorry JJ had a bad day with the tics

wow so many cranky kids...that's never fun for anyone
how cool JJ moved up to the next level and hit the Gold Level...yay for more pixie dust with the shooting range and all the new cards!

I think that the fact JJ was able to tell you he was going to have a big episode of tics was amazing! goes to show he is able to read his body and give you the warning.


yup I will be a busy mama, will keep me out of trouble
Megan plans on doing something with dance when she grows up, either a teacher or owning her own studio and wants to go to a college with a good dance program.

hope you have a great weekend!

 

[annmarieda]

While it is true that you just have to do what you have to, it still can suck. I am glad you are able to have a positive attitude. I know I mostly do...but every now and again I am struck with "really? now this?" Course it is the small miracles that tend to propel me forward and actually make me feel blessed. As for the kids... yes... they accept a lot easier than we do. I will never ever forget a nurse that was in charge of Zoe when she was in the NICU. She told me that while all of this seems so hard and "abnormal" to me... this is Zoe's normal. She knows nothing else. Course now.. she sees what other people have as normal and as things change... her normal isn't what it use to be. (like she use to love to eat watermelon and now absolutely can't) But those words from that nurse comfort me quite often.

HFCS - OMG! it is in EVERYTHING. I have two allergic to it. So we have had the ketchup issue for a while. Now though... with Zoe and her new list of "problem foods" It is foreseeable that she may not even be able to have ketchup at all.

 

[lovethattink]

Great update!

Thanks!

sorry JJ had a bad day with the tics

wow so many cranky kids...that's never fun for anyone
how cool JJ moved up to the next level and hit the Gold Level...yay for more pixie dust with the shooting range and all the new cards!

I think that the fact JJ was able to tell you he was going to have a big episode of tics was amazing! goes to show he is able to read his body and give you the warning.


yup I will be a busy mama, will keep me out of trouble
Megan plans on doing something with dance when she grows up, either a teacher or owning her own studio and wants to go to a college with a good dance program.

hope you have a great weekend!

It was a fun few hours!

I'm so glad he feels the ticks before they come. I'd be even happier if they'd go away. But for now, the warning he gets sometimes buys us time to get him to a safe spot.

We are just taking it easy this weekend.

While it is true that you just have to do what you have to, it still can suck. I am glad you are able to have a positive attitude. I know I mostly do...but every now and again I am struck with "really? now this?" Course it is the small miracles that tend to propel me forward and actually make me feel blessed. As for the kids... yes... they accept a lot easier than we do. I will never ever forget a nurse that was in charge of Zoe when she was in the NICU. She told me that while all of this seems so hard and "abnormal" to me... this is Zoe's normal. She knows nothing else. Course now.. she sees what other people have as normal and as things change... her normal isn't what it use to be. (like she use to love to eat watermelon and now absolutely can't) But those words from that nurse comfort me quite often.

HFCS - OMG! it is in EVERYTHING. I have two allergic to it. So we have had the ketchup issue for a while. Now though... with Zoe and her new list of "problem foods" It is foreseeable that she may not even be able to have ketchup at all.

Thanks for passing along the advice. I wish Zoe didn't have to go through all she goes through. Or you.

The newly formulated Hunts doesn't have HFCS. Hopefully ketchup won't be removed from her list.

Wish there was someway I could reach out and give you a big hug! JJ is such an amazing boy and should not have to deal with this! God has a purpose...faith, trust (and a little Disney pixie dust, too).

Aww, thanks. Nobody should have to deal with this. I believe that God is in control. While JJ may have no control over his body when these tics come, he is learning to trust God and give him the control. It's certainly brought the family together to pray together.

 

[kaoden39]

Great update!



Boy did you guys have a day of crying babies. That is not fun at all. I am sorry to hear JJ had the problem with the tic. But first aid really did well.


Love the CM with the cards.

 

[lovethattink]

Great update!



Boy did you guys have a day of crying babies. That is not fun at all. I am sorry to hear JJ had the problem with the tic. But first aid really did well.


Love the CM with the cards.

Thanks.

The cm in First Aid were very helpful.

Yes, the cards were nice and we were all surprised!

 

[kaoden39]

Thanks.

The cm in First Aid were very helpful.

Yes, the cards were nice and we were all surprised!

It's the little nice things that someone does that seem the best sometimes.