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

[mommy2mrb]

hope you have a wonderful day!

 

[kaoden39]

Happy Mothers Day!!

 

[lovethattink]

Checking back in. Sorry I've been MIA from your trip reports for so long been so busy with college work and everything only had time to follow my own. Anakin's practice birthday looks great.

Great to see you again! Is May the end of the semester for you?

What's Grumpy doing here? I hope he is having fun. Gettysburg? Hershey? Funny, our kids her go to Florida for senior class trips!

No, my dh has not had a documented seizure and wasn't able to tolerate an MRI (tried twice) to see what was going on. He gets extremely dizzy and weak and ends up on the floor. Now that we know this, we make very short trips in WalMart, and he avoids the food side in particular, as that seems to be where the problem occurs. It was someone observing him down on the floor once that clued us in to the issue of flicker rate with the lighting. Since then I have been aware of regular calls for an ambulance to WM for seizures. You think they would do something about it.

He is up there visiting family and eating great food! He is getting his fill of philly cheese steak sandwiches, the best pizza and PA Dutch food. He ate at Shady Maple on Friday. We all love that restaurant!!

Almost sounds like your husband could be having drop seizures. Poohbrlvr's ds has them.

Anakin has to be put to sleep for an MRI so that he can handle it.

Hello, lovethattink! I found your report several days ago and have been addicted to reading it through from the beginning. I've only gotten about half way but in that time I've totally fallen in love with Anakin and with you. I have had tears in my eyes reading about his challenges and victories. And since it's Mother's Day, it seems like the right time to tell you what a wonderful Mom you are, and wish you a Happy Day!

You've also reminded me what it is I love so much about WDW. Aside from the face that I adore that feeling of being a kid again, I just love that there is a place where families can come to spend time together that will accommodate whatever issues they are dealing with. I really don't think there is such a place anywhere else!

I can relate a little bit because my DS15 has Aspergers, and although his symptoms are pretty mild, vacations are a big issue with him, too many unknowns. There is a place at the beach we've gone every year since he was born and that's fine, but I remember the first time I took him to WDW. We had to Youtube all the attractions, so he would know what to expect, and he carried ear plugs and a little flash light in case things got too loud or dark. In spite of the anxiety, he had a fun trip, and we've gone back once every year or two since. Now it's such a familiar place, there is no anxiety at all, except for the flight. Over the years, with his sister's urging, he's tried most of the rides and will ride anything but ToT. We are taking him to France this summer, though, and that is bringing lots of anxiety. But we have to go - we haven't been since he was very small, and his grandmother there is very old now and not in great health. Should be interesting...

Anyway, thanks very much for the trip report! I've enjoyed it so much. I get tired of the DIS because of all the negative posts, but posts like yours are a good reminder for everyone to slow down, not worry about big kids in strollers or "healthy-looking" people in ECVs. We all just need to relax and be happy that WDW is there for all of us. Okay, back to reading now.

Happy Mother's Day!!

We love Disney! There certainly is something for everyone at Disney. We have so much fun there and escape reality for a little bit! Even though we go often, I still get goosebumps or tears occasionally when walking down Main Street USA. Especially love seeing people's reactions to seeing the castle for the first time. I hope it never gets old!

Glad your ds feels comfortable at WDW! I hope the flight to France goes well and you all have an enjoyable visit with your grandmother. He may surprise you.

We went out of state to visit my dh's grandmother who had end stage alzheimers. She had no idea who any of us were. She really didn't want any part of us, and told us quite frankly. When it was time to go, Anakin hugged her and told her he loved her. Brought a tear to my eye.

hope you have a wonderful day!

Thank you! Happy Mother's Day!

Happy Mothers Day!!

Happy Mother's Day!

 

[englishrose47]

Just checking in!!!!

 

[pwdebbie]

He is up there visiting family and eating great food! He is getting his fill of philly cheese steak sandwiches, the best pizza and PA Dutch food. He ate at Shady Maple on Friday. We all love that restaurant!!

Almost sounds like your husband could be having drop seizures. Poohbrlvr's ds has them.

Anakin has to be put to sleep for an MRI so that he can handle it.

Would you believe I have yet to eat at Shady Maple??? We do have good pizza up here, don't we? I am always surprised when people tell me they don't have pizza shops like we have in their areas.

I looked at drop seizures, doesn't describe dh. When I said "he ends up on the floor" I should clarify that with this -- He feels like he is going to pass out and everything is spinning, so he gets down on the floor until it passes. He has to close his eyes and hang on to a shelf. When it is mostly passed, he gets up and I have to lead him out of the store (while he keeps his eyes closed) to the car then come back in and finish my shopping. After having to do this twice, we now make very quick stops in Wal Mart. He knows when the problem is coming on as his palsy becomes more pronounced, things start spinning, he gets pale and chilled.

 

[lbuzz52]

i agree, it would make more sense to have oj in the bird cup. it kind of seems like it should have a sponsorship with tropicana or something like that. I'm glad to hear that Anakin's new meds seem to be helping and hope that they get the all clear for his age.

 

[lovethattink]

Just checking in!!!!

Great to "see" you!!

 

[kaoden39]

Hiya!! I just wanted to check in and see how life is treating you.

 

[lovethattink]

Would you believe I have yet to eat at Shady Maple??? We do have good pizza up here, don't we? I am always surprised when people tell me they don't have pizza shops like we have in their areas.

I looked at drop seizures, doesn't describe dh. When I said "he ends up on the floor" I should clarify that with this -- He feels like he is going to pass out and everything is spinning, so he gets down on the floor until it passes. He has to close his eyes and hang on to a shelf. When it is mostly passed, he gets up and I have to lead him out of the store (while he keeps his eyes closed) to the car then come back in and finish my shopping. After having to do this twice, we now make very quick stops in Wal Mart. He knows when the problem is coming on as his palsy becomes more pronounced, things start spinning, he gets pale and chilled.

You really need to try Shady Maple! I suggest a weekday lunch since it's cheaper then. I love their chicken croquettes and their stewed tomatoes. The shoe fly pie is to die for! My kids love their slushy machines, lol. They have the typical fare salad bar, carved meat (turkey and ham), filling (wow! someone I don't have to explain this to, lol!! I think I'm the only person in Florida who has potato filling instead of stuffing on holidays), sandwiches hot and cold, apple fritters, corn nuggets, chicken meatballs, hot bacon dressing (oh how I wish I could find this here, I'm going to have to make it sometime), etc.

I can understand that dizzy feeling at WM. I get migraines and I have to make it a quick stop or I'll get one. That's a shame he feels so badly there. I'm sure he dreads going there. Hope you don't mind me intruding and asking, Bell's Palsy or Cerebral palsy?

 

[lovethattink]

i agree, it would make more sense to have oj in the bird cup. it kind of seems like it should have a sponsorship with tropicana or something like that. I'm glad to hear that Anakin's new meds seem to be helping and hope that they get the all clear for his age.

Yes! That's what they need, sponsorship for OJ with the orange bird!!

Sadly, his no seizure run has ended. He has had 4 seizures out of the last 5 nights.

 

[lovethattink]

Hiya!! I just wanted to check in and see how life is treating you.

Thanks for checking in!!

Life has been a rollercoaster lately. Our days our wonderful! Our nights are tiring.

 

[lovethattink]

Update on Anakin, then back to the TR and our Mother's Day trip to CSR!!

There has been ALOT less crying. He is no longer crying at the drop of a hat. That is a very good thing!!

He is still worrying about things. This has not changed yet.

He's had seizures the past 4 out of 5 nights. But they have been short in duration and not very intense, thankfully.

His sensory issues are through the roof. He is way more sensitive to sound. The epilepsy center is not sure if the seizures are causing the sensitivity, or if the new medicine is causing the sensitivity and that in turn is causing the seizures, or if the seizures are being caused by the new medicine.

Today he gets starts taking double the dose of the new medicine. I am to watch him closely. And call back tomorrow if there are any changes. I am praying for discernment for us and the med staff to be able to tell what's causing what and how to help him.

You'll see in the TR from this weekend, that the sensory issues determined what we were able to do and not do.

 

[mickeystoontown]

Don't you hate it when you are going through the medicine changes? You don't know what's causing the side effects/changes and all you can do is play it by ear. I hate that Anakin is having the seizures again and will pray that they will stop sooner rather than later.

 

[Moodyzblu]

I'm so sorry about Anakin's seizures. Breaks my heart that he has to go through that ... and you too. I hope it can get figured out soon.

 

[annmarieda]

First, congrats to Grumpy! He looks very nice in his cap and gown.

Next... I am so sorry to read that Anakin is having troubles. I know that must just be so hard on you all.

Hope your mothers day was good though!!!

 

[lovethattink]

One thing I've learned over the past couple years is that our trip planning needs to make allowances for divine interventions. (I am trying very hard to change my focus from the negative outlook that they are interruptions to a more positive outlook.)

Friday was no exception.

The plan: I take Anakin in the morning to CSR to check in, bringing what little we might need. After check in we go to the neuro's office to pay his VEEG bill (had to be paid in full in 30 days or goes to collection agency, and this was day 30!!), then we eat lunch, swim, and chill in the room. Goofy works, then heads home to pack up the van and take care of some additional things before joining us for an early dinner.

What actually went down: Goofy gets a call while at work that they need him to stay til 10pm. If he comes home, he won't join us until after midnight. The car will have to be packed by me since he has the van at work. So this over packer now has to condense what is to be packed. Half of the trunk space is being used by the wheelchair already. I can't leave Grumpy in the house unattended, so he has to tag along in the packing, but he had just had a night of seizures and he is overly worried that we are going to get a bad room if we get there later.

By the time we finished packing the car it was lunch time, so I made him a turkey grilled cheese sandwich. He began to have a panic attack over the room. I couldn't calm him down, so we prayed and part of the prayer included giving the selection of our room to God. He calmed down, ate his sandwich. Everything dh needed to take care of at home, I was able to get done. And we were good to go to Disney!!

Check-in was a breeze! To appease Anakin, we had to stop by the room before we went anywhere.

There are automated gates that you have to use to drive to the village parking lots. These gates are different than the other resort. There are 2 arms. You insert your room key into the box and the first arm goes up. The 2nd arm is a solid bar that is like playing quick draw. It goes down between each car, so you can't "sneak" behind another without getting your car majorly dented.

I'm short and have to practically hang out the window to get my key into the slot. Ok, not practically, I am hanging out the window. So I felt much better when the man in front of me couldn't reach either. He had to open his door and step out of his car to get his key in the slot. It must have been the first time he used the gate. He was slow.

Anakin started flapping his hands in anticipation of the bar going down on the man's car. I assured him that can't happen, though I wasn't completely confident of what I said. It sure seems like that bar comes down as soon as you drive through.

He got through the gate, then we it was our turn and we got through the gate. I parked near the 9A sign and sure enough our room was just a few doors down!!

Our room was perfect!! Room 9127, it's a corner room so it has 2 windows.

The soaps have changed. They now have Tink on them! Love the bottle, but wasn't too keen on the scent. It's grapefruit. But with my cranberry scented Dial soap, the combination was a good scent to me!

On the sink counter was body lotion and facial soap.

On the bathtub was shampoo (2), conditioner (1) and body gel (1).

Very satisfied we headed off to the neuro's office to pay the bill. Dh called us while we were there. Someone volunteered to work. He was free to leave at the end of his shift!

He met us at El Centro at 6pm. We ate dinner at the Pepper Market. He and I shared a chicken fajita, which comes with rice and beans and Anakin had pizza.

For dessert we went to the campfire at the Dig site and ate roasted marshmellows!

This was a new sight.

The view at night...

The Cabana quiet pool and laundry room

We went swimming for a little at the Cabana's quiet pool, then headed back to the Dig Site to watch the movie, Goofy's Classics. When we got there, the movie screen wasn't set up. Apparently they can't show movies if the wind goes over 15mph. We went back to the room and watched tv instead, before going to sleep.

 

[lovethattink]

Don't you hate it when you are going through the medicine changes? You don't know what's causing the side effects/changes and all you can do is play it by ear. I hate that Anakin is having the seizures again and will pray that they will stop sooner rather than later.

We appreciate the prayer! It's the unknown that frustrates me. Thankfully he has been asleep with each of these seizures and had no idea in the morning he had them. He's been tired from the magic bullet.

I'm so sorry about Anakin's seizures. Breaks my heart that he has to go through that ... and you too. I hope it can get figured out soon.

Thanks, I sure hope it gets figured out soon!!

First, congrats to Grumpy! He looks very nice in his cap and gown.

Next... I am so sorry to read that Anakin is having troubles. I know that must just be so hard on you all.

Hope your mothers day was good though!!!

I did have a wonderful Mother's Day. It was strange with Grumpy being 1000 miles away though. I was shocked when I got a text from him wishing me a Happy Mother's Day before the rest of us woke up.

 

[mommy2mrb]

happy Anakin was able to work through his anxiety and you got a good room!
yay for Goofy getting there earlier than expected!

hope the new meds start working and Anakin's seizures stop happening at night

 

[annmarieda]

Yay for the corner room and that Goofy could come earlier than you had thought he would.

Pepper Market dinner is not the buffet? Or have they stopped the buffet. I just did an update on my TR that included the day we went there. I will be sad if things have changed back to non buffet.

Interesting change to the toiletries. Is that the change throughout? Or just at CSR? I think only Mickey ones have been available on all of our trips.

 

[lovethattink]

happy Anakin was able to work through his anxiety and you got a good room!
yay for Goofy getting there earlier than expected!

hope the new meds start working and Anakin's seizures stop happening at night

This morning the NP told me to increase his dose of the new med. The increase was double. I am seeing that he is drowsy, and not as hungry. Usually he has a hunger and thirst that cannot be quenched. It's wait and see til tonight. She said she is mailing me a prescription to get a whole bunch of tests done.