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

[mommy2mrb]

P & PD for the tests to give you the info the docs need!

 

[lovethattink]

We are still at the epilepsy clinic. Still nothing other than some mild twitching in his sleep. Even after strobe lights, blowing, video games all day, and processed food and sweets there haven't been any seizures. While I know its an odd request, please everyone pray they getty a documented seizure like the kind he was having the last few weeks.His carbamaxepine level its back in the range that works best for him, maybe its working a little to good for this video eeg??

 

[macleod1979]

My prayers are with you guys

-J

 

[mommy2mrb]

continued P & PD

started my HI cruise TR...link in siggie!

 

[kaoden39]

I feel odd praying for this but my prayers are with you. They need to see these seizures.

 

[EvangelineG]

Just wanted to let you know that I'm praying for you today too.

 

[lovethattink]

Thank you all. The test ends tomorrow morning. Hoping their monitors show more than what I am seeing. On the other hand, maybe it was as simple as the recent dosage increase to keep the seizures away? our next appt is May 1st to go over the results.

 

[momabaarjo]

I am so sorry I have been AWOL for the last week, but I want you to know you guys are always in my prayers! I so hope you can get some answers in your latest testing!

I love how Anakin was concerned about you not telling the story in the right order!

Love the new pictures from Fantasyland...ahhh here I go dreaming again!

 

[exwdwcm]

I've been such a bad reader- so behind! finally caught up!

love the avengers monorail- so cool! So sorry about the rough night with Anakin you had way back. But sounds like you've had some better days since. Love all the pics of the new FL- thanks for sharing!!!

and so glad you finally got your Harvey bag!!!

I hope all the testing went well with Anakin last week. Is he released to play ball again yet? He was so handsome in his uniform!

 

[momabaarjo]

Thinking about you...wondering if it was a Disney Monday!

 

[lovethattink]

Thanks for checking in and everyone's concern.

The last Disney Monday was the day before Anakin's testing. I have pictures to download. We finished another round of Sorcerers of the Magic Kingdom, ate at a Disney restaurant we never tried before, and rode 1 attraction. Can you guess the restaurant and the attraction?

There were showers at the testing center, so after he was done and had a head filled of sticky goo, he took a shower and was good to go. Good to go, guess where?!

This past Disney Monday we had lunch at Everything Pop. Anakin picked it as the place he wanted his birthday meal. I brought cupcakes from Publix with us, but I should have ordered a Duffy cake from Disney. (Do they make Duffy cakes?) He said it was the best practice birthday EVER! His birthday is Saturday. We had a death in the family and weren't sure about the arrangements. DH went up north to his family, we stayed behind because Grumpy has a final on Friday and prom on Saturday.

 

[kaoden39]

Hi there!


I am sorry to hear about the death in the family. Were they able to find anything while Anakin was in for the tests?


I love that it was the best birthday practice party EVER!! How great is that? A Duffy cake would have been cute!

 

[mickeystoontown]

I'm so sorry to hear about the death in the family. I'll keep you all in my prayers and ask that you all find comfort during this sad time.

On to happier thoughts, I agree with Anakin....what a great "practice" birthday!

 

[lovethattink]

Hi there!


I am sorry to hear about the death in the family. Were they able to find anything while Anakin was in for the tests?


I love that it was the best birthday practice party EVER!! How great is that? A Duffy cake would have been cute!

We don't go over the tests until May 7th at his appointment. They did tell us that the myoclonic twitching he was doing was not a seizure. So that we are to ignore. He didn't have any seizures during the test. However he did have an abnormal EEG. For now we keep the same medicines, they will discuss treatment options with us at the appointment.

Duffy outfits are on sale 3 for $30. He has "grandparents" (friends of my parents who have become very close to us, life family,over the years) who got him 6 Duffy outfits for his birthday! He didn't want to go to a park afterwards, he wanted to go home and see the outfits on Duffy.

I'm so sorry to hear about the death in the family. I'll keep you all in my prayers and ask that you all find comfort during this sad time.

On to happier thoughts, I agree with Anakin....what a great "practice" birthday!

Thanks appreciate the prayers.

We tried to tell him it's called an unbirthday, but he begged to differ. An unbirthday wouldn't be close to your birthday.

 

[kaoden39]

New outfits! How fun! What a thoughtful gift. It's always nice when they gifts like that.


I hope they get a handle on his seizures and figure this all out.

 

[lovethattink]

The day before Anakin's tests we went to the Magic Kingdom. We had never eaten at the Liberty Tree Tavern, so I made lunch reservations. We arrived there early after getting Sorcerers cards. We were the first people of the day to arrive. Gave our name, parked his chair, and sat on a chair.

We no sooner sat down and a cm stopped by us and asked Anakin if he ever saw this toy. It was a cup that you catch on a stick. He demonstrated it, and gave it to Anakin who looked at it like not having a clue what to do with it. He realized after a couple tries that Anakin was getting frustrated, and brought him over to the coloring table where he met him with a wooden tick tac toe game. They played for a bit and waiting area began to fill up.

Even though we were the first family to arrive. We did have an ADR too. We were the third family to be seated. The other two families were sent into different dining areas. We were sent to the Ben Franklin Room. For the longest time, we were the only family in that area.

Our server informed us that the catch of the day was Mahi Mahi served over homemade mashed potatoes with a gouda and bacon butter sauce. We all had planned on the turkey dinner, but the mention of mahi quickly changed my mind!

Anakin asked if they had grapes. He was informed no. I could see meltdown ready to happen, and I refused to let him ruin lunch. Within eye shot was the fruit stand. I ordered apple slices for Anakin off the menu to go with his turkey dinner and told him that Daddy would get him grapes.

I am having flash backs of the boy who didn't want grapes the last time, he wanted yogurt. Why yogurt? Because he dips his fries in there, gross! Why grapes this time?? Because Mommy and Daddy have lemons and apparently he loves lemon juice on grapes. Which was new news to us. I sure hope he learns to handle dissappointment in a way other than crying, hitting himself, etc. It's embarrassing at times to have an 7 year old acting like he's going through his terrible twos. It's been nearly 2 years of this! Things were getting better until he had those recent bad seizures. His personality changed immediately after that first seizure. The psychologist told us to pick our battles wisely. Grapes were not worth a full scale meltdown, easiest for all of us to give in on this one. (We are also back to square one on going down steps, he cannot even do 3 steps down anymore.)

With grapes in hand, it once again becomes the best day ever!

By this time, people are being seated around us. They are even getting their food. Anakin announces he has to go to the restroom, so dh takes him. DH sees our server standing around talking to another cm. They catch eye contact. Dh and Anakin come back to the table to see the food isn't here. He tells me that almost every table he passed had food. This was now 30 minutes after ordering. Perhaps they were ticked about the grapes?

The server stopped by to say the food would soon be here.

My mahi mahi

Dh's turkey (he didn't realize there was stuffing under the turkey til halfway through his meal)

Anakin's turkey

 

[momabaarjo]

Prayers for DH family.

I think given the circumstances that Anakin has been going through a melt down would be last thing I would worry about too and try to avoid, although people around you dont know the full story. Thanks to Ann and you I stop and think a little more before I do any judging of children's behaviors!

Hmmm....sounds like a pretty good way to celebrate a birthday! Can I be your child?

 

[Moodyzblu]

We got to eat at LTT when they still had characters and it was a lot of fun. Plus the food was pretty great. We had ADR's there this past trip but I cancelled them. My boys were in a "let's not eat anything" phase this whole trip and I couldn't see wasting money on a big dinner.

I can relate to having a seven year old melting down such as Anakin does. Jayden has a severe mood disorder/NOS r/o bipolar. Started when he was 5 and has pretty much taken over our lives. Long story ... But getting better. It's tough and I know the feeling of dagger eyes from people who have no idea what is really going on. No advice ... Just a hug of support from another mom who "gets" it.

 

[DMGeurts]

It sounds like you had a wonderful lunch! I will admit that eating at LTT is our favorite place - and always on the must do list. I used to eat the William Penn pasta, but it's no longer on their menu... The girls and I all tried the Freedom Pasta this time, and we all loved it - LTT will continue to be on our must do list.

I am glad you were able to avoid a meltdown... I am sorry that there are so many steps back after you had just gone forward, I just can't imagine how hard it must be for you to have to feel the judgement of others who have no idea of the situation. I agree with Tammie - reading about Ani and other children on The Dis has really taught me to think twice about the knee jerk reaction of judging the kids who are having a rough day. (((Hugs)))

D~

 

[englishrose47]

Sorry to hear about your loss !! You know I understand the myclonic jerks , having dealt withnit with a consumer !! The doctors seem to differ on whetehr it is seizure related or not , it is very frustrating . The turkey platter lokked yummy!