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

[lovethattink]

cute photo of Anakin and the girls happy you all got to spend some time together!

those bugs look like nats...we get them here in WA sometimes too and they are very annoying!

We are very glad we got to spend some time too!

Maybe they are gnats? They are a light brown/tan in color. They looked like ghost mosquitos except that they didn't sting.

Loved seeing pictures of your Dismeet! So glad you got to meet Judy and the girls again.

D~

Thanks! We are too! Hope to see them in 2013 in Charlotte if we travel by car.

 

[kaoden39]

Anakin made it almost a whole week without seizures. But last night he began with clusters again. This time during the second one we gave him the "magic pill". It was around 1:30pm. Good thing we don't have any plans for today.

We can't think of a single thing that could have triggered it. He had a good day yesterday. He worked ahead in math and did all his other school work. He didn't have any gluten or sugar. And he spent his evening playing with his trains. It was a nice calm day for him.

I am so sorry to hear about Anakin. Hopefully he'll be okay. I really think that more money needs to go into neurological research.

 

[lovethattink]

I am so sorry to hear about Anakin. Hopefully he'll be okay. I really think that more money needs to go into neurological research.

He had a very good day today! He meandered out of bed around noon. He was tired, and rested until a little after 1. Then he was ready to do school. He wanted to watch Twitches 2, so he really focused on his work. He got 2 pages of his math workbook done and a speed drill, plus ate lunch before the show. After the show he did all the rest of his work. He had no problems thinking or staying focused!

I agree, neurology needs more funding!

 

[kaoden39]

He had a very good day today! He meandered out of bed around noon. He was tired, and rested until a little after 1. Then he was ready to do school. He wanted to watch Twitches 2, so he really focused on his work. He got 2 pages of his math workbook done and a speed drill, plus ate lunch before the show. After the show he did all the rest of his work. He had no problems thinking or staying focused!

I agree, neurology needs more funding!

Maybe Nike should put the money they are saving by not paying Lance Armstrong into.

 

[t_daniels]

I third that neurology needs more funding!

 

[addictedtonostalgia]

Avoided all the pics of New Fantasyland, want it to be a surprise when I visit in March.

Anakin made it almost a whole week without seizures. But last night he began with clusters again. This time during the second one we gave him the "magic pill". It was around 1:30pm. Good thing we don't have any plans for today.

We can't think of a single thing that could have triggered it. He had a good day yesterday. He worked ahead in math and did all his other school work. He didn't have any gluten or sugar. And he spent his evening playing with his trains. It was a nice calm day for him.

Sorry Anakin had another seizure Is it around time for his medicine to get changed again? I hope it gets figured out or he gets to go awhile without them again soon.

Most of them have been in his sleep, so he is totally unaware he is having them. I think it's better that way.

It does affect his memory sometimes. For example, the other day we were driving at sunset and he rediscovered what a sunset was. He was so excited when he saw part of the sky orange and the rest of it blue. He wanted to know what was happening to make the sky so beautiful. I explained to him it was a sunset.

Last year he lost his ability to read. It has been a struggle for us to get it back. He is now back to reading 3 and 4 letter words. But we had to start all over at the alphabet, that's how much memory was affected.

For some reason, he retains everything Star Wars though. The neuro said it all has to do with different parts of the brain used for memory. He has also retained math and science.

The neuro said that based on where his Cortical Dysplasia is and where the signals come from, it is the english and reading he should retain and the math and science he loses. It's very puzzling how the brain works sometimes. Definately more research needs to be done!

Sorry to hear about how it affects his memory, it sounds heartbreaking. Interestingly though, I'm reading a book that talks about how good forgetting is so we can experience the sense of wonder---like he did at the sunset, so that is good. Too bad it has to affect more important areas. Weird how it affects the part of the brain you wouldn't expect...guess he is going to be a math/science kinda guy!

I don't envy people who study neuroscience...UGH! It is impossible for me to understand.

While my little man is resting, I will crank out some more updates. We are back tracking to September. I think it was Sept 26th.

DIS Meet!!

He was more fascinated with bugs that he found all over the wall and railing at the Lego store. They were all over at Pop too. They weren't love bugs and they weren't mosquitos. I'm not really sure what they were, but they were annoying. When I was taking pictures of the fireworks they were all over me. When we stayed the weekend at POP, I'd find a few in the bath tub each morning. Yuck! They were everywhere and worse than lovebugs.

How gross are those bugs? Bugs are my least favorite part of my field of study. I know they are important but I wish they didn't exist anyway. Especially ticks! Glad to hear they are gone!!!!

The pictures with Lisa and Rachel came out great, glad you got to see them again. Too cute that Anakin was too excited to eat!

 

[lovethattink]

Avoided all the pics of New Fantasyland, want it to be a surprise when I visit in March.

You can Camille have great willpower!


Sorry Anakin had another seizure Is it around time for his medicine to get changed again? I hope it gets figured out or he gets to go awhile without them again soon.

No, he is in the very upper limits for his tegretol. They said the only other option would be to add another seizure med. It could be a growth spurt or fighting off an infection? Those seem to trigger. He does seem taller.



Sorry to hear about how it affects his memory, it sounds heartbreaking. Interestingly though, I'm reading a book that talks about how good forgetting is so we can experience the sense of wonder---like he did at the sunset, so that is good. Too bad it has to affect more important areas. Weird how it affects the part of the brain you wouldn't expect...guess he is going to be a math/science kinda guy!

I don't envy people who study neuroscience...UGH! It is impossible for me to understand.

What is the name of the book? Sounds interesting. He is definately a math and science guy, though so is my oldest. I always struggled with math. Calculus was one of the hardest classes for me, both in high school and college. Then as we got more advanced in chemistry it became so much math. I had no idea what I was getting into when I picked my major. I picked the college I did because it didn't require physics as part of the major and all the others did. I wanted to avoid all the math involved in physics, lol.





How gross are those bugs? Bugs are my least favorite part of my field of study. I know they are important but I wish they didn't exist anyway. Especially ticks! Glad to hear they are gone!!!!

The pictures with Lisa and Rachel came out great, glad you got to see them again. Too cute that Anakin was too excited to eat!

Kudos to you to have to study bugs. I'd never make it. Dead ones ok, but live ones no way!!

He had trouble sleeping the night before too. He just wanted the next day to come. Guess we can't tell him when there is something special the next day.

Maybe Nike should put the money they are saving by not paying Lance Armstrong into.

Yes!

I third that neurology needs more funding!

AMEN!!

 

[annmarieda]

Do you have a PTR going for the Feb trip? Is that the princess run? We all shared it to taste it. Next time we will each get our own!!! We did get both cups though.

You NEED, huh? LOL. I know you will love it!! I think Mama will love it too!

Nope... No prt going. No tr from this last trip either. And next week I go to Vegas... I still have to finish unpacking from the wdw trip! I hope to finish my July trip... Start a tr for the fall trip.. And get a ptr going. I just need to find the time!

 

[petals]

Someone told us that those LoveBugs aren't even real some university over there made them to keep mosquito numbers down.

 

[lovethattink]

Nope... No prt going. No tr from this last trip either. And next week I go to Vegas... I still have to finish unpacking from the wdw trip! I hope to finish my July trip... Start a tr for the fall trip.. And get a ptr going. I just need to find the time!

You need more hours in your day.

Someone told us that those LoveBugs aren't even real some university over there made them to keep mosquito numbers down.

Emma, there are so many rumors about the lovebugs that I no longer know what's true and what isn't. The most widespread rumor is that they were genetically engineered to take care of the mosquito problem?

 

[WDWRids]

Checkin in to see how Anakin's night was last night. Hope you all rested well!

 

[KatMark]

So glad you got to see Judy and the gang.

 

[lovethattink]

So glad you got to see Judy and the gang.

Thanks! It's alway a pleasure to see them! We missed the boys though. They went for lunch somewhere.

 

[lovethattink]

I was searching for a picture, and took a trip down memory lane. Thought I'd share some.

At the playground of CBR

A DISmeet in Millenium Village

A past SWW. That stormtrooper would not stop til Grumpy put down his lightsaber. It was so funny.

Grumpy at Toontown. Have no idea of the date, but know it was before the year 2000.

Another stormtrooper another year

Tweedle dum or dee interrupting and important phone call

With my mom

Past Christmas

 

[mickeystoontown]

I hope that JJ did better last night and there were no seizures. John's Tegretol level has to be waaay higher than the "normal" seizure patient. Most have a trough level of about a 5 or a 6. John has to be at least an 8 or 9.

I loved the trip down Memory Lane. Oh how our children grow up before we know it!

 

[mommy2mrb]

love the trip down memory lane

 

[KatMark]

Love the pictures down memory lane...the boys look the same.

 

[kaoden39]

What a great trip down memory lane! I love the joy of the slide picture.

 

[lovethattink]

I hope that JJ did better last night and there were no seizures. John's Tegretol level has to be waaay higher than the "normal" seizure patient. Most have a trough level of about a 5 or a 6. John has to be at least an 8 or 9.

I loved the trip down Memory Lane. Oh how our children grow up before we know it!

Last night was wonderful. I had to check him a few times because I didn't hear anything. He was sleeping peacefully and quietly. Best night in a long time!

His levels are 10.8 so he is on the high end. 10 seems to be his magic number. The medicine he takes for OCD interacts with the tegretol, so we have to space them apart.

Love the pictures down memory lane...the boys look the same.

Thanks!

What a great trip down memory lane! I love the joy of the slide picture.

Thanks. That was joy and fear all bundled in one. That slide went faster than we thought it would.

 

[addictedtonostalgia]

Kudos to you to have to study bugs. I'd never make it. Dead ones ok, but live ones no way!!

Oh no, I don't study bugs, but I study ecology (focusing more on plants) which really looks at the interactions between organisms which unfortunately includes bugs. I do a lot of work out in the field, and that means a lot of bugs.

The book is called Botany of Desire, my plant biology advisor lent it to me, I wouldn't really recommend it unless you like plants a lot. It talked a lot about neurology in the marijuana section.

I'm not a math and science person either, I can't do math well. I consider myself more of a history and science person but obviously mainly a science person.

As weird as this sounds, I hope it is a growth spurt causing the seizures because I would hate for Anakin to get yet ANOTHER infection. Hopefully the doctors can get his meds sorted out soon. I'm glad to hear he had a much better night last night.

The trip down memory was so cute. I think they both favor each other and still look similar to what they looked like when they were younger. I don't look anything like I used to.