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

[kaoden39]

Cool! I know there was more slime this year, but I preferred last year's sliming. No seizures last night. He can't watch Dancing with the Stars, the flashing lights on the stage give him problems.

Yeah, I thought they were a bit overboard on the slime this year. Yay for no seizure last night. Too bad about the Dancing with the Stars. It looks like this may be a good season on there this year.

 

[lovethattink]

After the internet technician leaves, we are off to the World! It's time for a dose of Disney magic!! We have no plans and are just totally winging it. I am hoping for Epcot. We explored part of the F&G Festival, but didn't see the majority of it. Anakin is hoping for the MK. DH doesn't care. At any rate, it will just be for a couple hours.

Anakin is still ahead on work, but only by 10 days. He will lose 2 days when he goes in for his testing. Not sure what will happen there, but if he has alot of seizures as they are hoping he will need rest afterwards. I still have some room to work with though. My lesson plans have us ending 1st grade on May 18th, but his administrator says we have until June 1st, so I also would have all those days if need be. I was just hoping to have both kids finish at the same time. All senior grades are due May 18th.

 

[mickeystoontown]

I hope that you have a great day at Disney. I'd have to head to Epcot too so I could see the Flower & Garden Festival. I just love how they "redo" the park with all the flowers and plants.

I, like you, know that it's hard to explain how you hope that Anakin will have a seizure while being tested. Whenever I say that about my husband, people look at me like I have two heads. But, that's the only way the doctors can really see what's going on.

Ya'll have tons of fun today!

 

[annmarieda]

Have a fun day! Wish I was headed there with you. Instead, I have ucky work to do along with having an ucky cold. I think I want to move to florida!!!

 

[kaoden39]

I hope that you had a splendiforous day!!

 

[lovethattink]

I hope that you have a great day at Disney. I'd have to head to Epcot too so I could see the Flower & Garden Festival. I just love how they "redo" the park with all the flowers and plants.

I, like you, know that it's hard to explain how you hope that Anakin will have a seizure while being tested. Whenever I say that about my husband, people look at me like I have two heads. But, that's the only way the doctors can really see what's going on.

Ya'll have tons of fun today!

We had an awesome day! Spent almost 3 hours at the MK! We rode the new Avenger's monorail, defeated 2 villians on the Sorcerers game. Ate lunch at Tortuga Tavern, saw the Tiki Room and Hall of Presidents before heading back home.

I know, it doesn't seem right to want seizures for the test, but it will give them more information. It's especially important since his seizures changed so much over the last few weeks.

Have a fun day! Wish I was headed there with you. Instead, I have ucky work to do along with having an ucky cold. I think I want to move to florida!!!

Hope you feel better soon! Wish you were heading there with us too! It would be awesome if you moved to Florida!

I hope that you had a splendiforous day!!

We had a great day. Downloading pics now!! Update coming soon!

 

[DMGeurts]

I just wanted to quick check in and see how Ani is doing... I didn't have time to read back, but I am glad you got to spend some time at MK... I will be able to come back and read more tomorrow.

(((Many hugs)))

D~

 

[lovethattink]

I just wanted to quick check in and see how Ani is doing... I didn't have time to read back, but I am glad you got to spend some time at MK... I will be able to come back and read more tomorrow.

(((Many hugs)))

D~

He is doing ok. He goes for tests next week. The seizures are back to only lasting seconds instead of minutes, so that's a step in the right direction!


Getting ready to post an update. We rode the new monorail yesterday!

 

[lovethattink]

We went to the MK yesterday.

As I just mentioned above, we rode the new Avengers Monorail yesterday!!! Ok, it isn't new. According to a very cheery and informative cm at the TTC, it is monorail red with a sticker wrap of the Avengers around it.

It looks amazing!! I like it better than the Tron Monorail! Anakin begs to differ. He is heart broken that his beloved Tron will not be there anymore. Thankfully it's on a different track, so that helps him with the transition.

The sticker wrap on the windows causes the inside of the monorail to appear darker. It also blurs the view a bit. Someone had asked me if it made the monorail hotter since it's all black. It did the opposite, it made it cooler by keeping out the sun. The blurred vision out the windows made me feel a little closed in though, when the doors shut.

The exterior looks amazing. The pictures are very well done.

 

[annmarieda]

cool monorail.

 

[DMGeurts]

The Monorail looks awesome!!! How cool that you got to ride it!

Just so you know, the girls asked about Ani yesterday... They talk so fondly of him - they just loved the little guy... They were both heartbroken to hear that he's had a rough week. I just wanted you to know there are a few extra prayers coming Ani's way - from two girls who adore him.

(((Much love and hugs always)))

D~ (and the girls too)

 

[kaoden39]

Oh the Monorail looks so cute!

 

[mickeystoontown]

Wow! The monorail "wrapping" looks so cool. I'm glad that Anakin was able to make the transition from Tron to the Avengers rather easily.

I read your post that Anakin's seizures are shortening in length. I know that's a relief for you all. I forgot to mention before that my husband's neurologist had spoken with us about the about implanting a "pacemaker for the brain" which was called something like a vagus nerve stimulator. We haven't been able to get approval from the insurance company yet (it's been over a year since the doctor started trying) so we are continuing with the new meds. I don't know a whole lot about the stimulator but I wonder if that's something worth mentioning to Anakin's doctor.

 

[lovethattink]

cool monorail.

The Monorail looks awesome!!! How cool that you got to ride it!

Just so you know, the girls asked about Ani yesterday... They talk so fondly of him - they just loved the little guy... They were both heartbroken to hear that he's had a rough week. I just wanted you to know there are a few extra prayers coming Ani's way - from two girls who adore him.

(((Much love and hugs always)))

D~ (and the girls too)

I saw pictures of the monorail that morning online! Never thought we'd be riding it a couple hours later! It was a treat! We never had the honor of riding the Tronorail.

That's so sweet that they asked. I've been showing him pictures from you TR.

We certainly appreciate the prayers!

Oh the Monorail looks so cute!

It's a great look.

Wow! The monorail "wrapping" looks so cool. I'm glad that Anakin was able to make the transition from Tron to the Avengers rather easily.

I read your post that Anakin's seizures are shortening in length. I know that's a relief for you all. I forgot to mention before that my husband's neurologist had spoken with us about the about implanting a "pacemaker for the brain" which was called something like a vagus nerve stimulator. We haven't been able to get approval from the insurance company yet (it's been over a year since the doctor started trying) so we are continuing with the new meds. I don't know a whole lot about the stimulator but I wonder if that's something worth mentioning to Anakin's doctor.

There were some tears, but he transitioned well!

Yes! I know all about VNS! I have some friends on facebook whose children have VNS. It uses a magnet swipe and that aborts the seizure! If you ever need to talk to one of those parents just let me know and I can put you in touch with them.

We started with a new neuro last week. Our old neuro didn't give us anything to use for emergency use or to abort a seizure. This new one is very adamant about having something on hand. He explained to us about the Kindling Effect. How having seizures trains the brain to have more seizures. He said it's very important not to get those cluster seizures Anakin was getting. He gave us a medicine called Klonopin Wafers. They dissolve in the mouth. We had to use one on Friday and I was amazed at how well it worked!

The neurologist gave us a choice between Klonopin Wafers given orally or Diastat that is given rectally. We went with the oral wafer. Most of Anakin's seizures are non-convulsant seizures, partials or absence. He was concerned that he may be experiencing that Kindling effect.

 

[mickeystoontown]

:

There were some tears, but he transitioned well!

Yes! I know all about VNS! I have some friends on facebook whose children have VNS. It uses a magnet swipe and that aborts the seizure! If you ever need to talk to one of those parents just let me know and I can put you in touch with them.

We started with a new neuro last week. Our old neuro didn't give us anything to use for emergency use or to abort a seizure. This new one is very adamant about having something on hand. He explained to us about the Kindling Effect. How having seizures trains the brain to have more seizures. He said it's very important not to get those cluster seizures Anakin was getting. He gave us a medicine called Klonopin Wafers. They dissolve in the mouth. We had to use one on Friday and I was amazed at how well it worked!

The neurologist gave us a choice between Klonopin Wafers given orally or Diastat that is given rectally. We went with the oral wafer. Most of Anakin's seizures are non-convulsant seizures, partials or absence. He was concerned that he may be experiencing that Kindling effect.

If we ever get insurance to approve the VNS doctor's visit, then I'll definitely get in touch with you. It sounds like this new neuro is more in tune with what's going on. We were told long ago that it's best to stop the onset of a seizure as soon as possible because they do trigger more and more damage can be done to the brain. John took Klonopin a long time ago but we never had the Klonopin Wafers. Those sound like John's "magic medicine" a/k/a Ativan that he puts under his tongue. It sound like the wafers may be Anakin's "magic medicine".

 

[lovethattink]

If we ever get insurance to approve the VNS doctor's visit, then I'll definitely get in touch with you. It sounds like this new neuro is more in tune with what's going on. We were told long ago that it's best to stop the onset of a seizure as soon as possible because they do trigure more and more damage can be done to the brain. John took Klonopin a long time ago but we never had the Klonopin Wafers. Those sound like John's "magic medicine" a/k/a Ativan that he puts under his tongue. It sound like the wafers may be Anakin's "magic medicine".

Definately "magic medicine".

 

[mickeystoontown]

Definately "magic medicine".

I don't know how big the wafers are but I'm sure that they dissolve pretty easily. John's Ativan do. So, to keep them away from moisture until we need them, we put them in a contact case. We cut the two lens cases apart (to make it easier to slip in his pocket) and keep the pills in one side of the case. It keeps the moisture out and makes them easy to carry.

 

[lovethattink]

I don't know how big the wafers are but I'm sure that they dissolve pretty easily. John's Ativan do. So, to keep them away from moisture until we need them, we put them in a contact case. We cut the two lens cases apart (to make it easier to slip in his pocket) and keep the pills in one side of the case. It keeps the moisture out and makes them easy to carry.

They are very small, they come in little blister packs, each pill individually sealed.

The contact case is a good idea! If these weren't individually sealed, the humidity here would really do a number on them.

Does the Ativan cause an amnesiac affect when he has to take them?

 

[mickeystoontown]

They are very small, they come in little blister packs, each pill individually sealed.

The contact case is a good idea! If these weren't individually sealed, the humidity here would really do a number on them.

Does the Ativan cause an amnesiac affect when he has to take them?

The Ativan doesn't have much of a side effect unless he has to take quite a few of them to stop the partial seizures. Then, it's just sleepiness. John does some crazy things when he has seizures. He once jumped out of the ambulance before they had him strapped in good. Scary stuff! The amensiac effect usually only comes into play when he has a bad seizure. During those times, he won't remember much and often only knows who I am or who my mother is.

 

[lovethattink]

The Ativan doesn't have much of a side effect unless he has to take quite a few of them to stop the partial seizures. Then, it's just sleepiness. John does some crazy things when he has seizures. He once jumped out of the ambulance before they had him strapped in good. Scary stuff! The amensiac effect usually only comes into play when he has a bad seizure. During those times, he won't remember much and often only knows who I am or who my mother is.

Oh my! That is potentially dangerous! That's good that he doesn't have that side effect from the med.