Disney done differently, (BOG dining updates pages 202 and 203)

[lovethattink]

After playing at image works, we started over towards Test Track. It was almost 9pm so we knew we needed to pick up the pace to get to Test Track BEFORE the fireworks started.

The combination of loud noises and bright flashes during fireworks give Anakin focal seizures. Driving in a car at night with oncoming headlights have done the same. So has driving through wooded areas in the sun light where you get the shadow of the trees alternating with the light of the sun. Covering or closing one eye seems to help him. So does the Wilbarger brushing protocol and joint compressions after exposure to the lights or the sounds.

We made it to TT before Illuminations!! I think the majority of people must have been watching Illuminations because TT was empty! The standby line said 45 minutes, but it was walk up. As was the single rider line and the fast pass line. As soon as we reached the cm we were sent directly to door number 2.

I got a text from Grumpy. He was grumpy. He walked to Germany to get a Caramel covered rice krispie treat, and the store was so crowded he didn't want to be in the store. He said he tried to walk in there, but nobody could move it was that packed with people. Anakin said he was tired and wanted to go back to the motel. I texted back to Grumpy to see if he was ready to head back to CSR. He said he was hungry, but he'd meet us at the exit. I texted back he could make and heat up the left over fajita I had from the Pepper Market. Hurray for the microwave!

 

[jenseib]

I'm in too! What a buys first evening!
Is Schmolland the town you are from?

When we went in March of 2007 it was in the 40s the first night there and it was so cold. But at least I wasn't in Ohio!

 

[lovethattink]

We stood at door number 2 for nearly twenty minutes. Anakin was entertained by children that were behind us. They were telling jokes and laughing. He didn't understand their jokes, but he enjoyed being around such happy people.

The children asked Anakin where he got his glow necklace. He said from his prize bag, fully expecting the kids to understand about his prize bag. For a month, I had been collecting glow sticks from the dollar store, small legos, and silly bands. Each day of the trip he could pick out 1 toy and 1 pack of glow sticks. I bought extra glow sticks, because we learned on past trips that we often get duds. And duds can be so disappointing! This day he picked glow necklaces and a lego boat.

The lego boat came as a freebie in February for Lego VIP members at the DTD lego store. I also was able to get a freebie lego motor cycle in Feb too. One of the freebies was for shopping on a particular day there, the other was for spending a certain dollar amount. We actually ended up getting 2 of the boats in February. Instead of giving them to him then, I put them aside for our March trip!

When we exited TT and looked for Grumpy at the exit, Anakin spotted a Grumpy jacket and began running towards it. Before Goofy and I noticed it wasn't Grumpy, Anakin did an about face, and told us that wasn't his brother, but just someone with the same coat. We found Grumpy down a little further. He said he saw lots of people with his jacket on that night.

We cut through the fp machines to get to the parked stroller. As we reached the stroller, we were inundated by a sea of people. The flood gates opened as the hoards headed to the entrance of TT. The non-existent line we had, was quickly turning into a large queue. When the coast was clear enough to cut through, we excused ourselves and began to head to the exit of Epcot.

Note to self, best time to ride TT on an EMH night is during Illuminations. The worst time, is right after Illuminations.

 

[lovethattink]

I'm in too! What a buys first evening!
Is Schmolland the town you are from?

When we went in March of 2007 it was in the 40s the first night there and it was so cold. But at least I wasn't in Ohio!

I am originally from Pennsylvania Dutch country, but we now live in Florida, roughly an hour away from the Mouse! I think this link best described Schmolland. It's from the Exhausted from Parenting/ASD Children/Welcome to Schmolland thread. http://www.disboards.com/showpost.php?p=36327245&postcount=33

 

[jenseib]

I am originally from Pennsylvania Dutch country, but we now live in Florida, roughly an hour away from the Mouse! I think this link best described Schmolland. It's from the Exhausted from Parenting/ASD Children/Welcome to Schmolland thread. http://www.disboards.com/showpost.php?p=36327245&postcount=33

Thanks! I'll check it out. I am one of the Jennifers from the facebook March group! The one with 3 last names!

 

[ash-n-brensmom]

Hi there! I am following along as well!! I have been reading all your updates and looking at the crowd pics on Facebook too!! My fave is the sea of strollers outside CHH!! Couldn't believe how busy it all got after we left!!!! It was busy, but not holiday busy while we were there...I hope you got to do everything on your list!!

 

[lovethattink]

Thanks! I'll check it out. I am one of the Jennifers from the facebook March group! The one with 3 last names!

Thanks for letting me know! I can see how you came up with your DIS name!

Hi there! I am following along as well!! I have been reading all your updates and looking at the crowd pics on Facebook too!! My fave is the sea of strollers outside CHH!! Couldn't believe how busy it all got after we left!!!! It was busy, but not holiday busy while we were there...I hope you got to do everything on your list!!

I have been following (mostly lurking) yours and Ferb's PTR! Have you posted your TR? I will be posting that sea of strollers picture when I get to day 3 of our trip. It was unbelievable. Glad we were just there to eat that day, not to ride attractions all day.

 

[lovethattink]

We headed back to the car with Grumpy's teeth chattering that whole way. It was pretty cold out! The rest of us were toasty with our winter coats on!

Anakin wanted to put his legos into place once he discovered that mousekeeping will not come in our room while we are sleeping. So I let him do that before getting him ready for bed.

Goofy, Grumpy, and Anakin gave me my birthday cards. And we put them up with the Star Wars stuff too. My birthday wasn't until Sunday, but it was nice to see those cards the whole time.

Goofy got me a musical Tink card that played "I can Fly"! And a box of red hots. Doug Live use to be one of my favorite shows at MGM Studios. Miss it, and loved how Doug and Patty would share red hots. Remember that show, anyone? It starts with a circle, and then draw a line, the line's the horizon, the circle the sun, and maybe some squiggles that look like a hill, the hill we drove over on the way to Bluffington. Maybe I don't have the words all right, it's been a while, sure miss that show!!

 

[kaffinito]

I love how Anakin had to line up the Star Wars figures.

 

[lovethattink]

I love how Anakin had to line up the Star Wars figures.

Thanks! Wait 'til you see the next night's line up. I didn't realize he packed so many figures. I gave him a small rubbermaid container and told him to pack the toys he wanted. He came back with 2 more rubbermaid containers filled of legos. I told him if they fit in the suitcase he could bring all 3, otherwise, just the one. Wouldn't you know it, he managed to get all 3 to fit perfectly!

 

[KatMark]

KatMark has done a remarkable job on that thread! It was so helpful to our trip planning.

Thank you for the kind words.

We headed back to the car with Grumpy's teeth chattering that whole way. It was pretty cold out! The rest of us were toasty with our winter coats on!

Anakin wanted to put his legos into place once he discovered that mousekeeping will not come in our room while we are sleeping. So I let him do that before getting him ready for bed.

Goofy, Grumpy, and Anakin gave me my birthday cards. And we put them up with the Star Wars stuff too. My birthday wasn't until Sunday, but it was nice to see those cards the whole time.

Goofy got me a musical Tink card that played "I can Fly"! And a box of red hots. Doug Live use to be one of my favorite shows at MGM Studios. Miss it, and loved how Doug and Patty would share red hots. Remember that show, anyone? It starts with a circle, and then draw a line, the line's the horizon, the circle the sun, and maybe some squiggles that look like a hill, the hill we drove over on the way to Bluffington. Maybe I don't have the words all right, it's been a while, sure miss that show!!

Nice job on the set up of the Star Wars stuff. Is that open yet at the Studios?

 

[lovethattink]

Here is where things turn a gross! It was time to get ready for bed. Anakin still needs help getting dressed. Occupational therapy is really helping with this, and he can do most of it himself now. I was in the bathroom with him when he took off his pant. Sand from the dig site came pouring out of his back pocket along with 5 sand fleas. GROSS! Not once did he complain of discomfort. His poor backside was all bit up! I killed the fleas, I cleaned him up. Put some hydrocortisone cream on the bits. Got him dressed in his PJ's. Teeth brushed. Helped him crawl up into the bed.

It was time for our bedtime routine. Turn on the noise machine. Then Wilbarger brushing and joint compressions. Within seconds he was sound asleep!

 

[lovethattink]

Thank you for the kind words.



Nice job on the set up of the Star Wars stuff. Is that open yet at the Studios?

You're welcome! The store is open.

 

[Lidian]

Sand from the dig site came pouring out of his back pocket along with 5 sand fleas. GROSS! Not once did he complain of discomfort. His poor backside was all bit up! I killed the fleas, I cleaned him up. Put some hydrocortisone cream on the bits. Got him dressed in his PJ's.

Poor thing!! What a trooper he must have been to not say something earlier. Hope the cream helped and the bites didn't upset him later in the trip.

 

[lovethattink]

Poor thing!! What a trooper he must have been to not say something earlier. Hope the cream helped and the bites didn't upset him later in the trip.

Lidian, if they bothered him, he didn't say anything. Keep the sand fleas in mind when your children are at the dig site or if they are in the sand near the cabanas on your trip to CSR. KatMark also noticed them while laying in her hammock last trip.

We kept him out of the sand for the remainder of the trip. There were plenty of other things to do at the Dig Site, besides dig!

 

[lovethattink]

With Anakin falling right to sleep, it was easy for Goofy and I to fall asleep too. We are use to the family bed, so that wasn't an adjustment for us. The family bed started after Father's Day last summer. Anakin had his first Grand Mal seizure. He stopped breathing. Goofy did CPR on him and he was taken to the hospital by ambulance. Where after being checked out he was sent home 2 hours later and we were told he had a seizure! They assured us that most people have one seizure in their life and then it never happens again.

Unfortunately that wasn't the case for us. Seizures became a nightly thing. The family bed was instituted since he would burry his face in the pillow during seizures. I am happy to say that with only one medication, physical therapy, occupational therapy, change of diet and swearing off sugar-free gum the seizures have stopped!

His most recent EEG still shows spiking, which means there is seizure activity present daily, but we are not seeing any seizures! His last one was February 1st, the day he started going to occupational therapy 3 days a week instead!!!

We all have been able to sleep so much better at night!

While we fell right to sleep, Grumpy was a different story. He was up 9 times between midnight and 5am, either to get a drink or go to the bathroom. He only remembers being up once.

 

[lovethattink]

Day 2 Universal Studios

We went the Tuesday before to get annual passes. We had such a nice time there that day. The park was empty. We could walk right on most of what we wanted to do. The longest we waited for anything was 20 minutes. This was not the case on Saturday.

We woke up. Took showers. I made breakfast. Then we set out for the dig site to kill time before we needed to take Grumpy to Universal to meet up with friends.

It was this day that milestones were reached at the dig site!! Anakin was able to sit himself on a swing for the first time!! He tried to work his legs back and forth, but had trouble with his timing. Saw he was getting frustrated, so Goofy gave him a push. Next milestone was reached on the climbing thing there. He was able for the first time to keep balance to climb up and get to the platform leading to the slide!! He was also able to get himself onto the spinning pole too. And he was able to go down the steps by himself!! These are all things that would not have been possible 6 weeks ago.

I credit it to 3 days a week going for Interactive Metronome at the children's hospital and the two hours of PT and OT homework we are doing at home including therapeutic listening and the infinity walk.

 

[lovethattink]

We went back to our room to put our mugs in there. Much to our surprise, in that little bit of time, mousekeeping had come. We were given plenty of extra towels and it was obvious the floor had been vacuumed! Also several extra bottles of shampoo, lotion, and soap!! I guess mousekeeping likes those cute printed tip envelopes (and tip too). For the first day, I printed a Tink one, a Toy Story for the 2nd day, and a Mickey and Minnie envelop for the 3rd.

We were off to Universal Studios to drop off Grumpy. As soon as we hit the parking lot, he asked if it was ok he went on his own to find them. Told him to please text when he meets up with them. Anakin wanted to ride a few rides, but then he wanted to go back to CSR and go on the jaguar slide.

Universal's Meal Deal works differently than Disney's. It's more similar to Sea World's. Their GAC works differently too.

The Meal Deal is $19.99 for 1 park or $23.99 for 2 parks ages 10 and up. It's $9.99 or $11.99 for under 10. You can purchase a souvenir cup with unlimited refills for $8.99. However, many of the rides do not permit carry on items, so renting a locker would be an added expense to keep your cup. We gave Grumpy money for the Meal Deal.

For their GAC, we had to go to Guest Services. Unlike Disney, each visit requires us to get a new card. For the stroller as wheelchair card, they gave us a printed ticket. How it works at Universal, we went to a ride entrance. The would write a time on our ticket for when we could return. I was told this time was 15 minutes less than the actual wait time. Then we could walk around, or sit on a bench in the shade, or snack until our return time. Sort of like a fast pass. Then we would take our card to the ride attendant who would write on the card again.

Anakin wanted to ride One Fish, Two Fish. He just couldn't wrap his mind around the concept of going to a ride to get a card written on, but not riding the ride. So he went to the play area and played.

 

[kaffinito]

Unfortunately that wasn't the case for us. Seizures became a nightly thing. The family bed was instituted since he would burry his face in the pillow during seizures. I am happy to say that with only one medication, physical therapy, occupational therapy, change of diet and swearing off sugar-free gum the seizures have stopped!

on the seizures - that must be so terrifying for you!

Keep up with the great TR - I'm really enjoying it!

 

[lovethattink]

on the seizures - that must be so terrifying for you!

Keep up with the great TR - I'm really enjoying it!

Thanks so much for the encouragement and hugs. At first it was very terrifying and very frustrating because it took months to get testing done and answers from the medical community. Now we know exactly what we are dealing with, we are becoming better educated, and learning ways to overcome all of this. The tables have turned, he may have all these medical conditions, but they do no longer have him!