Every Day's a Holiday (3 updates 12/7 page 10)

[lovethattink]

I would love to bottle up the month of November and keep things as they were, cool temps and JJ doing well. He hasn't had a seizure since Nov 9th. Even with that one, there was no regression. He's only had a few major ticks the whole month, and days between them! I hear him using the positive self-talk he's learned in therapy and I see him using deep breathing when things are starting to get the best of him. And better yet, he's not hesitating to verbalize when he's uncomfortable and needs out of a situation!

He was able to sit through the Candlelight Processional without earplugs, holding his ears, or having the lighting bother him. The previous 2 years he could not sit through it. It was too painful.

At Pecos Bill's he was able to sit on the seats. Back in September at MNSSHP on the 18th, he couldn't balance himself on those seats. A cm brought him a chair from Tortuga Tavern so he could sit to eat. He also wore headphones that day to eat. With Megan and Lisa he didn't need the head phones at all. And was even running from portal to portal while playing SotMK!

The last few days, we've had record temps here in Florida and he was minding the temp last night. I know there are more cooler days to come. So here's to the good days of November and the cooler days ahead this winter!

 

[lovethattink]

So glad he likes his pillowcase!! I got inspiration from the amazing people from the Big Give... I'm a long way from sewing clothes though

I was a little nervous when Trev asked me to sew him a pillowcase too! Merry Christmas!!

Jackie

He loves it! Thank you for thinking of him!

Just gotta LOVE J.Js smile!

Thanks!

 

[lovethattink]

Are You Ready? ​

The morning of September 18th started out perfectly. The weather was beautiful. Dh had the day off. And JJ woke up feeling great for the first time all summer. It was Murphy’s Law in action. We were suppose to be on a two week vacation up north. But we cancelled at the last minute because JJ was having so many problems between seizures and tics. This day was too perfect to pass up. We had to take advantage of the weather and how well he felt. It was around noon. Dh and I quietly discussed what to do. I suggested MNSSHP. He agreed!

I went ahead and purchased tickets. It was a big OUCH to the pocket, but we justified the expense as a substitute for our planned vacation. It was around $30 more buying the tickets same day, rather than in advance as passholders.

JJ was so excited to go to MNSSHP. Right away he knew he wanted to wear his stormtrooper costume. The only problem was that it was too hot to wear it. Instead, we took it along and said it if got cooler he could wear it. In the meantime, he was happy with the super hero cape from Sandy (ladylyons) and the Trust Me I’m a Jedi shirt.

We stopped at the TTC to get our tickets. There were many people stopped here doing the same. All I had to do was give our confirmation number and we were in business with tickets in hand!

There were several costumed people on the ferry ride from the TTC to the MK. As soon as we got stepped off the ferry, JJ spotted pin trading boards lined up all along the benches. He was so excited. Thankfully dh grabbed a couple pins at home and had them in his pocket.

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We should have waiting until the MK to get the tickets. There was a special Will Call area that was roped off and not a soul was in line!

These were taken another day. But I love the fall décor and the castle as backdrop.





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It was just after 4pm so we entered the turnstile using our MNSSHP ticket rather than our APs. We were directed to cm with wristbands. They put the wristbands on us and told us that we would need to show them later. They directed us to cm with maps and treat bags. This year’s bags had Frozen on one side and Muppets on the other.

I’m not sure if JJ was more excited to be at the party or more excited about the prospect of getting the party SotMK card? We thought it was too early to get the card. We were wrong. They began giving out the cards at 4pm to guests who had both a party ticket and a wristband. All members of the party had to be present to receive one. We didn’t know they were handing out cards, so we set off to eat supper before the party. We were headed to Columbia Harbour House only to learn it closes early on party nights. So we settled for Pecos Bills. It had been years since we last ate here. They didn’t have chicken nuggets, so it hadn’t been a consideration.

This was also, one of the first times we ate at a counter service since JJ started his restrictive diet. No gluten, no high fructose corn syrup, no red dye, no caffeine, no chocolate, no sugar substitutes. A manager had to come out and take his order.

One of JJ’s favorite things to eat at Disney was french fries dipped in yogurt. According to the allergy book, the yogurt had red dye. The ketchup was ok, since Disney uses Simply Heinz, no red dye and no high fructose corn syrup! He went with a kid’s turkey sandwich on a Udi’s bun, french fries, and grapes. Dh and I went for a #3 (a burger with an onion ring, bacon and BBQ sauce), his with fries, mine with sweet potato fries.

We waited and waited and waited for our food. Dh was directed to a certain area to stand and wait where other people with special diets were also waiting. JJ and I went to find a seat.

The seats at Pecos Bill’s do not have backs on them. JJ got out of the w/c and onto a seat and nearly fell off. A cm saw this and came right to our table. He offered to get JJ a chair with a back. That was so nice of him! He had to go over to Tortuga Tavern to get the chair.

With JJ settled into a chair and us waiting and waiting, we got out the party map and talked about what we’d like to do. In 2012, we did not see the villain’s show. This was something dh and I wanted to see. JJ thought it might be to scary for him. But I rememinded him this was called Mickey’s NOT-SO-SCARY-Halloween Party. So he agreed to give it a try. I looked on Kenny the Pirate’s App to see where the characters were and who they were. He wanted to see so many characters. I told him to pick his top three. He picked Flynn Rider, Mickey Mouse, and Dr. Facilier. All three of us wanted to see the parade and fireworks. Just JJ wanted to Trick or Treat. There you go, a plan was made, but we were still waiting for food.

I texted dh to see if they forgot about the order. He texted back, lots of allergies and lots waiting. I stopped timing the wait after 30 minutes because once we had our plan for the evening, JJ wanted the phone to play video games. So I know our wait was more than 30 minutes but not sure how much more.

The food came. JJ hated the gluten free bun. He can’t stand the gluten free bread at home either, unless it’s toasted or grilled. We should have just skipped the bun. We knew for next time. We were hungry and dug into the food without taking any pictures.

After eating, we headed over to the restroom at POTC to get JJ in his stormtrooper costume. CM were starting to line the streets for the party. One stopped JJ and they talked Star Wars. I knew that the ToT stops can get crowded later on, so I decided we’d start at Splash MT and go from there until they got too crowded.

There were three stops for candy in the Splash Mountain area.



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The people in front of us seemed to know what they were doing and where they were going for candy. They were heading to POTC next. We headed there next. JJ panicked. I remembered this from last year. It was the fog coming from POCT. He thought it was on fire and he didn’t want anywhere near there. Thankfully this year, thanks to the theater he understood about fog machines. Once he was sure it was “fake” smoke not real, he was game to keep going.

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Tortuga Tavern was a place where people could get party wrist bands if they didn’t have one on.

Next stop was the Tiki Room for ToT.





We passed the Cadaver Dans along the way

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The next stop for ToT was at the Horseshoe Saloon. This was also where Woody’s Dance Party was located. So not only did he get a treat for his bag, but he got to see Woody, Jessie, and Bullseye!!

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There was still some time before the first Villain’s show. So we stopped at the SotMK booth behind the Christmas Shoppe. JJ was thrilled to get his HM card!! He wanted to go try it right away. We told him another day we’d give it a try. It was almost time for the villian’s show.

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Let’s stop for a moment and take inventory. We weren’t even 45 minutes into the party and already we’ve gone to several trick or treat stops (our candy bags were half full as they were giving out a handful of candy at each stop), seen 3 characters, and got the special SotMK party card!

 

[lovethattink]

Are You Ready? Villains Mix and Mingle

We got there just in time to find a spot and catch the show.













And JJ got to see Dr. Facilier after the show.

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JJ was quickly getting overheated. We needed to get him into air conditioning. He wanted to see the parade, but we knew that was out of the question. So we decided to go to see Mickey and the Prince and Princesses at Town Hall. Whichever line was shortest, that’s where we’d head. It was Mickey’s line. It said a 10 minute wait, but it was double that. Which was fine, because it was in air conditioning and it gave JJ time to cool off first.

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We went through the store and right back inside to the princess line. This line was larger than when we got into Mickey’s line and Mickey’s line was now shorter. Go figure, lol. The people in line around us were very friendly and everyone was happy. I never saw them let so many people into the room at one time. People lined the entire length of the M&G plus the people who were meeting them. It was more fun watching the people interact with the princesses than standing out in the hall anyway!

JJ had received a Rapunzel hair whipping spell in his pack of SotMK. He wanted them to sign his card instead of an autograph book. When we got up there, they asked him to explain how the card works. Of course, he went into great detail. Rapunzel asked, “like this?” and before we knew it, Flynn was grabbing JJ out of the way and Rapuzel was whipping her hair at the flume pen.

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Next in the room was Snow White and Prince Charming. JJ’s biggest nightmare is getting kissed by a princess.

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Or so he thought. He discovered he doesn’t like anyone knocking on his helmet more than getting kissed.

And then it happened…











He had fun with Cinderella and Prince Charming.​

 

[lovethattink]

Are You Ready? Celebrate the Magic/HalloWishes/Villains Mix and Mingle​

Now it was time for the castle projection show, Celebrate the Magic, and then HalloWishes. Our timing couldn’t have been better! We went on top of the train station to watch it and take pictures!

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After HalloWishes, JJ begged to go back to the Villians Mix and Mingle. There was a 10:05 show and we had just enough time to hurry there. It was already in progress til we got there. We saw the ending and he got to meet Dr. Facilier again!

You may notice some hoodoo voodoo. JJ did. Dr. Facilier changed and grew taller, and a certain stormtrooper turned Jedi.

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It was such a fun party! We missed the parade, so we put that on the must-do list for Oct 14th’s party. We couldn’t wait for our next party! October 14th was only a month away!

 

[kaoden39]

What great updates! I love Jj with Snow White! Oh the horrors of her kissing him!


I love the Villains! They are my favorite characters! I will make it to Disneyland some year for Halloween! I need a picture with my Villains!


I think Flynn Ryder has great facial acting going on. He has that sarcastic look that Flynn gets in Tangled.

 

[mommy2mrb]

Such a fun night for you guys! Tell JJ we saw a little boy the night of mvmcp with three kisses one on forehead and on each check, he said all the pretty ladies kept kissing h, he was about four and was proud of his kisses!
Bummed we missed the villain show looks so fun !
So sweet that JJ got a homemade pillow case from Trevor Jackie did a great job!

 

[lovethattink]

What great updates! I love Jj with Snow White! Oh the horrors of her kissing him!


I love the Villains! They are my favorite characters! I will make it to Disneyland some year for Halloween! I need a picture with my Villains!


I think Flynn Ryder has great facial acting going on. He has that sarcastic look that Flynn gets in Tangled.

You'd love the villains show!!

The Snow White meet and greet was absolutely his least favorite.

Flynn is awesome.

Such a fun night for you guys! Tell JJ we saw a little boy the night of mvmcp with three kisses one on forehead and on each check, he said all the pretty ladies kept kissing h, he was about four and was proud of his kisses!
Bummed we missed the villain show looks so fun !
So sweet that JJ got a homemade pillow case from Trevor Jackie did a great job!

He said, "Ewww, that's disgusting!!"

We missed the villains show last year and if they had it any previous years. I'm so glad we stopped to see it this year.

Last night JJ slept with the case on his pillow.

 

[ladylyons]

It's fun to see what they've kept or deleted. It's almost been a decade, and it's still being used! The first year was the best, there was a great fade in/fade out of JJ and dh leaving the baby care center saying it's for dads too.

I'm sure it is. That does sound like it was a great part for JJ and your DH.

I hope the cool weather stays for you guys so JJ continues to have such great days.

What a great time you guys had at the party!! Love that JJ is getting use out of his cape.

Glad that the party went so well for you guys and you did get a lot done. Happy he got to meet the villains and Mickey. Love the pictures with the princesses and the princes. Funny about Snow White giving him a kiss. Poor JJ.

 

[lovethattink]

I'm sure it is. That does sound like it was a great part for JJ and your DH.

I hope the cool weather stays for you guys so JJ continues to have such great days.

What a great time you guys had at the party!! Love that JJ is getting use out of his cape.

Glad that the party went so well for you guys and you did get a lot done. Happy he got to meet the villains and Mickey. Love the pictures with the princesses and the princes. Funny about Snow White giving him a kiss. Poor JJ.

The cool weather is gone. While the rest if the country is dealing with snow and ice, we have been having temps in the 80's. I saw that one town reached record high if 88 the other day.

Thanks! Loved the party hope to get to one next year.

 

[lovethattink]

JJ made it a month of no seizures. The count starts again because last night he had 3 partials. He doesn't remember them and feels great today!

 

[mickeystoontown]

JJ made it a month of no seizures. The count starts again because last night he had 3 partials. He doesn't remember them and feels great today!

A whole month! That's cause for celebration! I hate that he has to start the count all over again but a month is a long time.

 

[mickeystoontown]

It always amazes me how much ya'll get accomplished in so little time. The meet and greet pictures are all so very good and I had to giggle when JJ received his kiss from a Princess.

 

[DisNorth]

Glad that JJ is doing so well, a month is great. Although it's too bad the clock has to reset. He progress sounds great, especially that he is verbalizing his needs!

You MNSSHP looks like such fun!

I bet JJ doesn't like snow white, but the pictures are cute!

 

[ladylyons]

The cool weather is gone. While the rest if the country is dealing with snow and ice, we have been having temps in the 80's. I saw that one town reached record high if 88 the other day.

Wish I could give you our weather. We've been in the 30's in the morning and reaching highs of mid 50's and I hate it!!! The worst part for me is it's just plain cold no hint of warmth in the air at all. Normally I'd be ok with 50's but this is just a cold 50.

JJ made it a month of no seizures. The count starts again because last night he had 3 partials. He doesn't remember them and feels great today!

Yeah JJ for making it a month!!! That's great he woke up feeing good today and doesn't remember them. I hope your weather cools back down so JJ can get back on track with no seizures.

 

[mommy2mrb]

I thought that would be his reaction to the kissing

sorry JJ had some partials the other night, its good he didn't remember them and he felt okay in the morning! hope he continues to be seizure free again!

 

[lovethattink]

A whole month! That's cause for celebration! I hate that he has to start the count all over again but a month is a long time.

A month is the longest he's gone in a long time. It was so nice too!

It always amazes me how much ya'll get accomplished in so little time. The meet and greet pictures are all so very good and I had to giggle when JJ received his kiss from a Princess.

That pattern of ToTing at those locations first became our plan for subsequent parties. It worked each time. Of course, we didn't see the 7 dwarfs. But we did get to see Jack and Sally at the last party near the end of the night!

I'm sure you can imagine his polite disgust. I'm glad he held it together though.

Glad that JJ is doing so well, a month is great. Although it's too bad the clock has to reset. He progress sounds great, especially that he is verbalizing his needs!

You MNSSHP looks like such fun!

Sending you a pm.

I bet JJ doesn't like snow white, but the pictures are cute!

It seems for the longest time we were doing one step forward and three steps back. It was great to keep progressing forward.

Wish I could give you our weather. We've been in the 30's in the morning and reaching highs of mid 50's and I hate it!!! The worst part for me is it's just plain cold no hint of warmth in the air at all. Normally I'd be ok with 50's but this is just a cold 50.



Yeah JJ for making it a month!!! That's great he woke up feeing good today and doesn't remember them. I hope your weather cools back down so JJ can get back on track with no seizures.

Lol, you can keep your weather. But I will take 70's and 60's though, lol.

Brrrr, I don't miss those cold temps or shoveling snow, or scraping ice off the window in the morning.

I thought that would be his reaction to the kissing

sorry JJ had some partials the other night, its good he didn't remember them and he felt okay in the morning! hope he continues to be seizure free again!

Haha! I'm sure you can hear him too and seeing the over dramatic reactions.

I hope so too. Not having seizures really seemed to help with all the sensory issues too. While he felt good yesterday, every little thing bothered him. And he was a man on a mission for cheesecake and nothing else.

 

[ladylyons]

Lol, you can keep your weather. But I will take 70's and 60's though, lol.

Brrrr, I don't miss those cold temps or shoveling snow, or scraping ice off the window in the morning.

Darn! I was hoping to pass our colder weather off on someone else. Everyone is just surprised that I'm cold though because anytime I'm pregnant I normally freeze everyone because I can't get cool enough and now I'm freezing along with everyone else. I'd be happy with 70's too. That's a nice comfortable temperature for me.

Thankfully I park in the garage so when I leave to bring the kids to school in the mornings I don't have to deal with windows fogging up. Poor DH left this morning at 6 am and he actually had ice on his windows. First time in a long time.

 

[lovethattink]

I'm glad you have the garage for the car. That is odd that you are cold and not hot this pregnancy.

I had to reset our house thermostat. Typically we keep the house at 80 during the summer. But with the cooler weather over Thanksgiving, the house stayed around 75. When the heat spell went through last week, he minded it. And I had to drop the temp in the house from 80 to 75. He's walking around in shorts and I'm in sweats. Dh even had on sweat pants and a sweat shirt.

 

[lovethattink]

Back to a Christmas time update


This week, we were back at Epcot. Our first stop was to Guest Services to renew JJ's DAS. This was the first time the line was short. When it was JJ's turn, we were at the counter by the window. He was looking at the poinsettias. Usually he is very articulate, but for the life of him, he could not say the name of those flowers. He sounded like Pooh when he said, "oh bother, I'll call them Christmas Flowers."

Next stop was to the Christmas snack stand in World Show Case.

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I have found my favorite holiday drink!!! I had the apple cider flavored with toasted marshmallow. Wow!! It was so sweet, so yummy. It tasted like a LeFou's Brew, but was hot instead of cold. Dh had a hot chocolate with peanut butter flavoring. I know I'm not suppose to have chocolate but I took a tiny taste. It was so good too. It tasted just like a Reese's Peanut Butter Cup. He said it was his favorite too. JJ had a plain cider. He didn't really care for his.

Sigourney Weaver was narrating the Candlelight Processional. She was fantastic. She looked radiant and happy. Her dress was very pretty.

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We had dessert at Sunshine Seasons. JJ and dh had cheesecake, I had mushroom soup. On the way out, we discovered these hidden gems.

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These were incredible! Hoping to get to the resorts before Christmas to check out the gingerbread displays there too.

This week we have reservations at BOG and Le Chefs de France. It's Grumpy's birthday. The big 2-0! He saw a picture of Megan's macaroni and cheese and decided he wanted that for his birthday meal. Neurologist visit this week for JJ too. He had a ton of blood work done. Hoping to get good results back.

School is right on track. Assuming JJ has good days, he will be finished with all his school work by SSW! We have been doing school work on Saturdays and while waiting for his appointments.