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

[lovethattink]

well he is a very personable little guy think she felt the same way, know we do
yes she did....so are you going to share with the class? and hello when's your birthday?

Thanks. He never meets a stranger, huh?

Well found out when your birthday is......


ITS TODAY


Happy Birthday Tink!!!!!!!!!!!!

LOL, Yes today! We celebrated it yesterday. Lunch at EoS with D and family. Then headed over to the MK. While in line for the monorail, we learned that there was a soft opening over at the new Fantasyland expansion, so we headed there!! Road the Barnstormer!

I wish I did have "normalcy" tips to share. We just kind of go-with-the-flow and make do with whatever the situation is at the time. John hasn't had a full blown seizure in quite a while but he does have lots of facial twitches, occasional mood swings, and auras. I can always tell when his medication levels are off because he gets really grumpy and nothing is right in his world. I've learned that there's no time for me to worry about the small stuff and take it for what it is.

I am sure that it is very hard for you since this is your child. There's nothing like seeing your child go through something like Anakin does.

I am not sure if ya'll have ever tried this or if it's something that the doctors would consider for Anakin but John has what we call his "magic medicine". (our daughter gave it that name when she was in elementary school) It's Ativan and when he starts to have an "aura" or his facial twitches get too bad, he puts one under his tongue every 15 minutes until it stops. Sometimes, they stop with just one pill but sometimes it takes several. He has his magic medicine in his pocket at all times. Because the pills dissolve easily, we keep them in a contact lens case. It has a rubber gasket on it and it seals off really well which keeps moisture out.

That's pretty much it for us too. Go with the flow. We know what to avoid, but we try to keep things as normal as possible.

It's good that he has an aura and can take something for it. Most of my son's are partials in his sleep, so thankfully he doesn't know he's having them. There doesn't seem to be any warning with the petite mals during the day. Yesterday, however, we went to visit family who is here for the winter. They didn't have their air conditioning on. Anakin started seeing white spots after a bit, so we got out of there and cranked up the air conditioning in the car and gave him some water to drink. That was the first he ever had any warning he was able to tell us about that we were able to stop!

Thank you!!


I can download pics again to photobucket!! Yay! Hope to finish up our Feb trip soon. It's been a year since I started this perpetual trip report. I am thinking it is time to soon end it. What do you think?

 

[mommy2mrb]

Thanks. He never meets a stranger, huh?

no he doesn't and how can anyone not want to be his friend!

LOL, Yes today! We celebrated it yesterday. Lunch at EoS with D and family. Then headed over to the MK. While in line for the monorail, we learned that there was a soft opening over at the new Fantasyland expansion, so we headed there!! Road the Barnstormer!

cool, can't wait to see your photos!

That's pretty much it for us too. Go with the flow. We know what to avoid, but we try to keep things as normal as possible.

It's good that he has an aura and can take something for it. Most of my son's are partials in his sleep, so thankfully he doesn't know he's having them. There doesn't seem to be any warning with the petite mals during the day. Yesterday, however, we went to visit family who is here for the winter. They didn't have their air conditioning on. Anakin started seeing white spots after a bit, so we got out of there and cranked up the air conditioning in the car and gave him some water to drink. That was the first he ever had any warning he was able to tell us about that we were able to stop!

thats great you were able to keep the seizure from happening!

Thank you!!


I can download pics again to photobucket!! Yay! Hope to finish up our Feb trip soon. It's been a year since I started this perpetual trip report. I am thinking it is time to soon end it. What do you think?

more photos! aw just start another TR....you have to keep those of us who don't get to go as often updated with the parks...esp with MK and Fantasyland....plus keeping us updated on you guys too

 

[englishrose47]

Just checking in and catching up!!

 

[kaoden39]

 

[mommy2mrb]

 

[DMGeurts]

Yes, we did! Loved them! I don't think Anakin stopped talking from the time he met them to the time they left. I don't know how D feels, but to me it felt like we knew each other forever.

Did D, tell you she helped me pick out my b-day present? It was nice having a 2nd, 3rd and 4th opinion on the bag.

Sorry I am just replying now...

It was very wonderful meeting you Michelle - and we had so much fun meeting your family, as well... Anakin is so adorable - and my girls learned so much from him!

I agree - it felt like we knew eachother forever!

And I loved your bday present - you got a great deal on it! Are you going to post pictures? It was such an awesome gift... If only it came in blue... Man, if it came in blue (with a red bow and yellow accents - LOL_ - I would be all over it...

How is Anakin doing??? I hope he is doing OK still.

D~

 

[blessedmom4]

Happy Belated Birthday Tink. Praying you are all well!

​

 

[sl_underwood]

Happy belated birthday! Sorry have been a bad friend with everything thats going on. Now going to catch up on your TR

 

[kaoden39]

I was thinking about you earlier and I wanted to stop by and say HI!! I hope all is well with you all.

 

[KatMark]

Hope u had a great birthday

 

[lovethattink]

Oh I really hope he gets it!! I can hardly wait to hear.

He went into the store and asked if the manager made a decision. The manager said not yet, then went and posted on their facebook page that they are looking for a part time worker. My son wishes they would have just told him no, or what he needed to learn. He said there was a quiz about the fish they stock and there were a few obscure ones he had never heard of. So he is assuming he wasn't knowledgable enough, but he is certainly willing to learn and research them.

more photos! aw just start another TR....you have to keep those of us who don't get to go as often updated with the parks...esp with MK and Fantasyland....plus keeping us updated on you guys too

We have had the pleasure of going alot recently. I still need to download pics from the soft opening. Just no more Mickey bars for Anakin!!

Thanks for the b-day wishes!!

Just checking in and catching up!!

Good to see you!

Sorry I am just replying now...

It was very wonderful meeting you Michelle - and we had so much fun meeting your family, as well... Anakin is so adorable - and my girls learned so much from him!

I agree - it felt like we knew eachother forever!

And I loved your bday present - you got a great deal on it! Are you going to post pictures? It was such an awesome gift... If only it came in blue... Man, if it came in blue (with a red bow and yellow accents - LOL_ - I would be all over it...

How is Anakin doing??? I hope he is doing OK still.

D~

They do have a Donald blue on their website, but it's not a true Donald.

Thanks for helping me pick it out! Loved meeting you all!

Happy Belated Birthday Tink. Praying you are all well!

Thanks for the b-day wishes!!

Happy belated birthday! Sorry have been a bad friend with everything thats going on. Now going to catch up on your TR

Thanks for the b-day wishes. I think I was late on yours too, or maybe just sent you a b-day text.

While we had 3 nasty days of seizures, we have been having some amazing Disney days with Spring Break being last week!!

I was thinking about you earlier and I wanted to stop by and say HI!! I hope all is well with you all.

Thanks for stopping by. We went to the MK on Monday for an early lunch, and Anakin ate a Mickey Bar just before we headed home. He started to have seizures once we got home. Very similar to the ones he had 2 weeks ago. The common denominator of both...chocolate. So no more chocolate for this little guy!! He stopped having seizures around 9pm.

Hope u had a great birthday

Yes, it was a great b-day! Or at least day before b-day.


I hope to get the pictures uploaded. I have the trip to finish, soft opening of Fantasyland, and pics of the F&G Festival. Though most of you have already seen them.

 

[mommy2mrb]

hope Anakin had a peaceful nights sleep and no more seizures

 

[kaoden39]

Hi,

I think that manager shouldn't be a manager. You should tell a person if you aren't going to hire them.


I hope the seizures have calmed down. Too bad about the chocolate.

 

[lovethattink]

hope Anakin had a peaceful nights sleep and no more seizures

Hi,

I think that manager shouldn't be a manager. You should tell a person if you aren't going to hire them.


I hope the seizures have calmed down. Too bad about the chocolate.

The seizures are doing better. But behavior is another story. I think yesterday was the most stressful day of my life. His anger level was off the charts. I'm not sure if it's the seizures that cause more meltdowns or if it's the other way around, but there is definately a relationship between his meltdowns and the seizures.

I know he said his head doesn't feel right. So I guess he is still out of sorts. But I want my sweet, happy little boy back!!

So I am working on the TR and thinking of happier times!

 

[lovethattink]

Sorcerers of the Magic Kingdom revisited:

We last left off on our Feb TR with Anakin and Christian having a blast with Sorcerers of the Magic Kingdom. They would watch each other cast magic spells to battle villains. To pass the time waiting for the next portal, they would cast cards against each other. They both remembered with amazing accuracy what happened on the screen and they acted it out. There was additional excitement among us because we had defeated ALL the villains and became Master Sorcerers.

Once achieving Master Sorcerer, the next quest was acquiring all 70 cards. As the days progresses, cards 61-70 were pulled from circulation. The rumor was that when the game went live, Disney was going to sell packs of those high numbered cards. So the quest for cards 1-60 began.

There are now both rounded edged cards and square edged cards. We decided that edges didn't matter to us. We were going for number!

It took playing twice a week for a month to acquire all 60 cards. As until last week, we had never received a Rapunzel card in a pack. We still never got Monstro or Magic Beans in a pack. Those were traded for.

Our next quest was defeating medium level. We did this over spring break! We are now on the hard level. We have tried 9 times to defeat Kronk to no avail. He keeps saying best 2 out of 3, but he’s beating us 9 out of 9!!

The CM at Sorcerers training said it’s no problem to bump us down if we give up. But he said that to the wrong person!! Goofy is not one to give up. He has a very competitive edge and if it is possible to beat the villains then he will want to continue trying!!

There has to be some sort of strategy involved that we aren’t “getting”. We listen to clue words on the screen, but we are missing something. It’s definitely an enigma.

 

[mickeystoontown]

The seizures are doing better. But behavior is another story. I think yesterday was the most stressful day of my life. His anger level was off the charts. I'm not sure if it's the seizures that cause more meltdowns or if it's the other way around, but there is definately a relationship between his meltdowns and the seizures.

I know he said his head doesn't feel right. So I guess he is still out of sorts. But I want my sweet, happy little boy back!!

So I am working on the TR and thinking of happier times!

Glad to hear that the seizures are getting better and I pray that the anger levels return to normal. I know how stressful it can be when the levels are all out of whack and nothing is right in their opinion. It's very hard for the caregiver. Sending big hugs your way!

 

[lovethattink]

Glad to hear that the seizures are getting better and I pray that the anger levels return to normal. I know how stressful it can be when the levels are all out of whack and nothing is right in their opinion. It's very hard for the caregiver. Sending big hugs your way!

Thanks, I appreciate the understanding and prayer. I'm hopeful we'll get some great insight from the epileptologist this month. He's seen a neurologist all this time, but now we're going with a pediatric epileptologist.

 

[DMGeurts]

I am so sorry Tink... I hope Ani is able to get back to his normal self soon. (((Many HUGS))) I can't imagine how hard this must be on everyone.

I did love the update. We didn't get to play the game when we were in MK. We probably should have, at least, gotten the cards - but the thought never crossed my mind. Oh well, maybe next time.

D~

 

[lovethattink]

I am so sorry Tink... I hope Ani is able to get back to his normal self soon. (((Many HUGS))) I can't imagine how hard this must be on everyone.

I did love the update. We didn't get to play the game when we were in MK. We probably should have, at least, gotten the cards - but the thought never crossed my mind. Oh well, maybe next time.

D~

I'm glad you like the update! I have another installment almost ready to post. Still downloading some more pics.

Not getting to do something is another great excuse to come back and visit soon!! How are the AG clothes coming along? Did you start at TR?

 

[DMGeurts]

LOL - I agree, it's a great reason to come back.

Um, well the AG clothes are on the back burner - honestly, I haven't made an AG outfit since I started doing the Ultimate Park Bags... I am now booked solid with custom orders until August - it's really insane - but I love it!

I did start a TR - I can't believe I didn't tell you - you must go check it out. I am not anywhere near our DTD day together, but I have days 1 & 2 done. The link is in my siggy.

D~