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Old 03-16-2011, 09:39 AM   #31
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KatMark has done a remarkable job on that thread! It was so helpful to our trip planning.
Thank you for the kind words.

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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?
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Old 03-16-2011, 09:42 AM   #32
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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!
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Old 03-16-2011, 09:51 AM   #33
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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.
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Old 03-16-2011, 10:08 AM   #34
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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.
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Old 03-16-2011, 10:46 AM   #35
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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!
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Old 03-16-2011, 11:00 AM   #36
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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.
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Old 03-16-2011, 11:15 AM   #37
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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.






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Old 03-16-2011, 11:38 AM   #38
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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.




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Old 03-16-2011, 12:32 PM   #39
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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!
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Old 03-16-2011, 12:50 PM   #40
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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!
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Old 03-16-2011, 01:03 PM   #41
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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!
I can't even imagine how terrifying that first seizure (and others to follow) must have been.

The tables have turned, he may have all these medical conditions, but they do no longer have him!

EXCELLENT!

Love the updates; and hooray for the achievements at the Dig Site playground.
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Old 03-16-2011, 01:13 PM   #42
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Once Anakin was done in the play area, he was ready to go on One Fish, Two Fish. We headed over there. It said it was a 45 minute wait. There was no cm in site. He said he could stand in line for 45 minutes. He has no concept of time, but we decided to try waiting it out in line. It wasn't too hot, and he was wet from the play area, so that kept him cool.

He was so excited to be going on this ride. Every now and then, a burst of excitement would just explode out of him and he would jump up and down. He did great in the line when it was just a single file line. He began to have issues when the line weaved back and forth and we were surrounded by people. Juicy Fruit gum seemed to help him.

The following pics were taken last Tuesday when we got our passes, and I didn't ride but took pics.
















After One Fish, Two Fish, he wanted to ride the Trolley. He was visibly showing signs of being over stimulated. So we took the card with us and got the time to return put on it. We were going to go in a building and sit. He dug his chin into my side. I asked him if he'd rather leave the park than wait the hour for his turn to ride the trolley. He said he had to leave and didn't want to ride any more rides.
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Old 03-16-2011, 01:41 PM   #43
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We headed back to CSR but stopped at the Burger King near Cross Roads for lunch. When we got back to our room, there was a key in the room safe! Engineering had fixed it! Yay!

Anakin was much better and re-grouped. We put on our swim suits and headed over to the pool.




The water slide was the big draw here. There is a big box of life jackets the right hand side facing the slide near the bottom of the slide. The jackets are all assorted sizes. You just help yourself and put it back in the box when you are finished with it. This is different from when we stayed at POR. There we had to sign them in and out from the marina.

The pool temp was COLD!! It barely felt heated. I stood at the bottom of the slide waiting while Goofy and Anakin got in line. Despite the frigid water temps, the line for the slide was nice sized. About 10 people ahead of them. Anakin loved the water slide and rode it three times!

As soon as he was done with the slide he wanted that life jacket OFF!! Last summer before he got sick, he was a great swimmer. He could swim both on top and under the water. He was so frustrated that he couldn't do those things anymore. He tried, but just couldn't remember what to do. When he did kick and use his arms, he just didn't have the strength he use to have. I told him he can take swim lessons this summer and re-learn how to do all that! And reminded him that his strength is increasing and he is doing more and more things all the time!!
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Old 03-16-2011, 02:15 PM   #44
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After swimming, we headed back to Universal to pick up Grumpy. Traffic was super thick on I-4. We really need to learn an alternate way there! It took us an hour to get there from CSR. We met Grumpy near before the bag check, turned around and headed back to the car. It took another hour to get back to CSR.

I made good use of our time by calling Disney Dining and changing our lunch and dinner resies for March 13th, my birthday! Changed our resie from T-Rex for lunch (figured Anakin had enough stimulation to last him for a while, he didn't need a noisy and busy lunch) to the Plaza Restaurant for 2:15pm. And cancelled our 7:15pm resie for the Plaza Restaurant.

Even though Grumpy had the meal deal at Universal, he was still hungry when he got back to CSR. We headed to the Pepper Market. We all got the exact same food we had the first night since it was so incredible. Once again, we were not disappointed and really enjoyed our food!!

Anakin asked if he could have a mug as a souvenir. We told him he could have one of ours when we got home. But he pleaded his case, that he would like one of his own now to drink out of like everyone else. He said it was ok that he couldn't have soda, he would pour his juice boxes or milk in there. So we asked the server for a mug for him. When he asked what he would like in the mug to drink, all four of us in unison answered, "ice, please". The server looked at us funny and asked, "ice?". Again in unison, "yes, ice, please."

Grumpy stopped at Cafe Rix and ordered raspberry gelato. This is the first time he ever used a key to the kingdom for payment. Let me just add, that this was the start of him using the key to the kingdom card for food. Good thing we were only here a couple more days!

We went to bed with full bellies, tired feet, and exhausted bodies....after Anakin set up his legos.

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Old 03-16-2011, 05:52 PM   #45
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Day 3 Happy Birthday to Tink

Our room was very close to bus stop #4 at CSR



We decided to use Disney's transportation this time. We waited at the bus stop for over 20 minutes, when a Magic Kingdom bus finally came in sight. And it did not pull over, and drove right on by us. It was completely packed with people. We debated to take the bus or car, and decided to take the car, because the number of people at our bus stop would not all fit on the next bus. We weren't sure if the next bus would skip the Casitas and Ranchos, or hit them first and possibly drive by us again. We took the car.

Then the ferry.







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