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Old 12-09-2011, 10:37 AM   #1531
cgncga
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Originally Posted by lovethattink View Post
Neuro said probably not a seizure. He insists that petite mals have to have eyes blinking.
It sounds like a seizure to me. Grace has had episodes like this more than once. She usually comes out of them saying "what?" but the not responding to anything and then talking about the show that was on before the blanking out started sounds just like her. I remember her aide at school (who has lots of experience with sieizures) talking about walking through the halls with Grace one day when she blanked out and when she came out of it, she couldn't figure out how she got to the library from the kindergarten wing. That was a seizure and it sounds a lot like what Anikan just had.

Hoping Anikan is feeling better and you have a great trip to Disney.

Catherine
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Old 12-09-2011, 11:37 AM   #1532
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It sounds like a seizure to me. Grace has had episodes like this more than once. She usually comes out of them saying "what?" but the not responding to anything and then talking about the show that was on before the blanking out started sounds just like her. I remember her aide at school (who has lots of experience with sieizures) talking about walking through the halls with Grace one day when she blanked out and when she came out of it, she couldn't figure out how she got to the library from the kindergarten wing. That was a seizure and it sounds a lot like what Anikan just had.

Hoping Anikan is feeling better and you have a great trip to Disney.

Catherine
Totally forgot about this, I had a friend's DD last year while we were visiting who did the same thing.. her eyes were open, but not responding, she didn't remember what happend....they later found out she has epilepsy and is on meds for it now.
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Old 12-09-2011, 02:39 PM   #1533
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I am finally packed!!!



Sorry you've been sick. I hope you are feeling much better. Thankfully my stomach flu didn't last very long.

Wow, that's a big move. Is the online program through the public school?



I will have to look after vacation.



I'll have to check, too, to see if we have the Hub. I think we do.



Goofy was a great sport. He has a smart phone, I don't. So he was busy taking and texting the pictures to Buzz. He made a comment about it was interesting having lunch with Buzz that day. Hopefully we'll all get to meet in May and it won't seem so strange to text pictures of new stuff at CSR.



I hope you get swim suit weather. For us, it's always swim suit weather if it's a properly heated pool. Doesn't matter what the temps are outside if the pool is nice and toasty. We are hoping to get some swimming in. We didn't swim at POP at all.

I'm glad we are winging it. It will be nice to stop and smell the roses, take in the details and not be rushed.

I don't think my body could handle single digits.

I didn't hear about the gingerbread peppermint icecream. Where at the MK is that? I'd assume the icecream shop?

Thank you.

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Anakin made today very interesting.

He started his day by having a strange episode in the living room. I had gone to his bedroom to get clothing for him. When I came back. I asked him to get dressed and he didn't move. I put the clothing in front of his face and he still didn't move. I tried tapping him, talking to him, and he just sat there frozen. I rubbed his back and noticed that his tongue was in a very odd position and his mouth was half open. I touched his face and he still didn't move. I began talking to him gently, while rubbing his back. I couldn't tell if he was breathing or not. My heart started to sink into my stomach.

Just like that, he said, "I don't like that show." It was a commercial. I asked what show? He was talking about the show that was on right before he had this episode. He continued on as if nothing happened.

Immediately afterwards, the neurologists office called. How is that for timing. I told the secretary what happened. She made an appointment for him on Tuesday.

Then later this afternoon, Anakin was so happy. He told me that he is going to need Daddy to help him wrap my Christmas present. I asked him what it is. He said it's a secret but I am going to love it! I asked Goofy about my present, and he said "I didn't get you anything." I told him that Anakin thinks he did and needs help wrapping it.

A little while later, Grumpy calls me to the bedroom and asks why I have a case of vanilla coke on the bed. I told him I didn't put it there. He said he didn't. Grumpy said he didn't. Then we realized what happened. Anakin put it there. He saw it by the door and thought his Daddy had brought it home from work. He was going to wrap it for me for Christmas. He was so disappointed to learn it was for Disney. I told him how much I appreciated him thinking of me. He is so sweet.

After bath time tonight, I put a bath robe on him. He was so proud to wear it. Before bed, I gave him his pajamas. I noticed tape on his bath robe. I asked him why there was tape on it. He said to keep it closed. He didn't like how the tie didn't keep it completely closed. He is so resourceful, lol!

This is the type of seizure my aunt has with her petite mals. When I was a kid it always amazed me because we would be in the middle of conversations and she would do that.

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we have HUB and Doogie is listed!!



how strange...do they think it was a seizure? hope all will be okay
awe, such a little sweetie thinking of his mama...maybe Goofy should get a 6 pack and let him wrap it up for you!
he is a smart little guy

have a great trip!
Oh yay! You can watch Doogie!!
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Old 12-13-2011, 06:38 PM   #1534
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Originally Posted by cgncga View Post
It sounds like a seizure to me. Grace has had episodes like this more than once. She usually comes out of them saying "what?" but the not responding to anything and then talking about the show that was on before the blanking out started sounds just like her. I remember her aide at school (who has lots of experience with sieizures) talking about walking through the halls with Grace one day when she blanked out and when she came out of it, she couldn't figure out how she got to the library from the kindergarten wing. That was a seizure and it sounds a lot like what Anikan just had.

Hoping Anikan is feeling better and you have a great trip to Disney.

Catherine
Quote:
Originally Posted by mommy2mrb View Post
Totally forgot about this, I had a friend's DD last year while we were visiting who did the same thing.. her eyes were open, but not responding, she didn't remember what happend....they later found out she has epilepsy and is on meds for it now.
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Thank you.




This is the type of seizure my aunt has with her petite mals. When I was a kid it always amazed me because we would be in the middle of conversations and she would do that.



Oh yay! You can watch Doogie!!

We went to the neurologist today. He is ordering a 48 hour EEG test to see what's going on.
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Old 12-13-2011, 06:59 PM   #1535
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We are back from a weekend at POFQ. I am sooooo glad we decided to wing it. Had I gone and made plans for each day, I would have been sorely disappointed. Going with the mind set of going with the flow saved my sanity this trip!!

Check in did not go smoothly. I did online check in at the 10 day prior period. I saw that my resie said first floor garunteed for medical reasons, so I did not make any further requests. However, at check in, the request disabilities made for me did NOT show up in their computer at POFQ.

The CM called someone to see if we could be moved to a first floor room. The person on the phone found us a room! The room was ready! Yay! We thought we were all set, but as it turned out we would find out later...we were not.

While I was at check-in, the rest of the family was talking to a Disney Research cm. He was asking if we'd participate in a "Diary Study". They agreed. We were given a diary book, brief instructions and were on our way. We all thought this was neat! A highlight to our trip!















Everyone was hungry and Grumpy wanted to try the buffet at CSR. So we headed there first instead of to our room.
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Old 12-13-2011, 07:01 PM   #1536
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Oh man, sending good thoughts and prayers for Anakin and the appt!!! I hope you guys are well, haven't seen ya in a while, been missing you guys!! Hope you had fun last weekend!!
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Old 12-13-2011, 07:06 PM   #1537
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A 48 hour EEG? Wow, my prayers and thoughts will be with you all on that.



That diary looks like homework on vacation.
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Old 12-13-2011, 07:20 PM   #1538
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hope the EEG will give you some answers!


the diary looks fun, a neat souvenir....you'll have to let us know what special gift you get!
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Old 12-14-2011, 07:58 AM   #1539
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Oh man, sending good thoughts and prayers for Anakin and the appt!!! I hope you guys are well, haven't seen ya in a while, been missing you guys!! Hope you had fun last weekend!!
Miss you too! Sorry we couldn't get together today. Appreciate all the prayers and good thoughts!

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A 48 hour EEG? Wow, my prayers and thoughts will be with you all on that.



That diary looks like homework on vacation.
It will be an ambulatory EEG. Trying to figure out what exactly the staring is. He is not sure if he is falling asleep with his eyes open, seizing or something else. He said the EEG should shed some light.

It didn't feel like homework. Actually it felt better keeping an eye on our spending. I think we spent less than what we normally do because we were aware of it.

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hope the EEG will give you some answers!


the diary looks fun, a neat souvenir....you'll have to let us know what special gift you get!
I hope so too! The diary isn't a souvenir. We have to mail it back to Disney. We have never really paid attention to our spending at Disney. I kept it with us and wrote as we went along. It's crazy that a QS meal for a family of 4 is hard to do under $55. The only meals that were under was the one where Grumpy and I ate soup instead of a meal or shared an entree. We love clam chowder and Fri night they had clam chowder. He and I shared a muffeleta because we didn't know if we'd like it. It was filling, even eating only half. And we had plenty of room left for dessert!
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Old 12-14-2011, 08:25 AM   #1540
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The lunch buffet at the Pepper Market at CSR on Friday was disappointing compared to our first experience with it on Monday. On Monday, the food was covered with lids. On Friday, the lids were off and much of the hot food looked dried out, especially the chicken at the grill station.

I had chicken quesadillas, seasoned red potatoes, ceasar salad, and icecream. The quesadillas were excellent! The guacamole is my favorite, so the two together were heaven to me.

I really wish they would have churros at lunch time. I love vanilla icecream, a churro and honey. Instead, I had vanilla icecream with honey. The cinnamon gives it that extra umph making it incredible.

Alba was our server. She was ok. David, the server we had on Monday, was much more attentive.

We paid by credit card. The bill was $72 with the tip for the 4 of us. The register receipt for credit card payment listed the recommended tip for 18% or 20%. Dh felt obligated to tip.

We went into Panchitos window shopping. Anakin wanted to look at their pin book. He made one pin trade.

The sun was shining bright and based on the weather forcast this was our best day to swim so we headed back to the resort. Anakin was so excited to go back to the room and put on his swim suit and try the water slide!

Up next, will we be able to get in the room?
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Old 12-14-2011, 06:19 PM   #1541
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Sorry you had a bad experience with lunch. And sorry I missed ya today!! Julie and I shared a pumpkin funnel cake....girl, thanks a bunch, that thing was AWESOME!!!!!
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Old 12-15-2011, 07:13 AM   #1542
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Sorry you had a bad experience with lunch. And sorry I missed ya today!! Julie and I shared a pumpkin funnel cake....girl, thanks a bunch, that thing was AWESOME!!!!!
We stuck to the food that didn't look dry and that we know we love. We enjoyed what we ate, except for the tomato basil soup. It tasted more like a tomato sauce then a soup. Grumpy decided it would make a great salsa for his quesadilla, lol!

Glad you enjoyed the pumpkin funnel cake. I wonder if they will keep it permanently or just seasonally?
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Old 12-15-2011, 07:18 AM   #1543
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It will be an ambulatory EEG. Trying to figure out what exactly the staring is. He is not sure if he is falling asleep with his eyes open, seizing or something else. He said the EEG should shed some light.
Hopefully the EEG gives you some answers. That's the kind of EEG I keep trying to get for Grace, but her neurologist doesn't like them. He'd rather her keep doing the 24 hour inpatient EEGs that never show anything because she sits on the hospital bed all day watching TV. Her seizures are brought on by fatigue and being over stimulated/frustrated which isn't going to happen in the hospital, but will happen in normal day-to-day life at school.

Catherine
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Old 12-15-2011, 07:37 AM   #1544
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Hopefully the EEG gives you some answers. That's the kind of EEG I keep trying to get for Grace, but her neurologist doesn't like them. He'd rather her keep doing the 24 hour inpatient EEGs that never show anything because she sits on the hospital bed all day watching TV. Her seizures are brought on by fatigue and being over stimulated/frustrated which isn't going to happen in the hospital, but will happen in normal day-to-day life at school.

Catherine
I hope you can get Grace the tests she needs. I got a call yesterday from the EEG place. It's going to be a video EEG. The doc didn't tell me that. The scheduler said the cord doesn't reach far. This should be interesting. There will be a list of things he may and may not do. The only things the scheduler told me was that he can't talk on a cell phone or get wet. She said the technician will go over all the other details the day they do this. She said to allow 2 hours to get him hooked up and an hour to take it off. Yikes!
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Old 12-15-2011, 07:44 AM   #1545
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I hope you can get Grace the tests she needs. I got a call yesterday from the EEG place. It's going to be a video EEG. The doc didn't tell me that. The scheduler said the cord doesn't reach far. This should be interesting. There will be a list of things he may and may not do. The only things the scheduler told me was that he can't talk on a cell phone or get wet. She said the technician will go over all the other details the day they do this. She said to allow 2 hours to get him hooked up and an hour to take it off. Yikes!
Then allow another couple hours for baths and hair washing afterwards! If the glue they use for this test is anything like what they use for the 24 hour inpatient ones, it will take a lot of shampoo and several washings and then a lot of brushing to get the glue out of his hair. The first time Grace had the 24 hour EEG I had the girls scheduled for Christmas pictures the next day. I'd made that appointment long before I had the EEG date. Good thing I had Santa hats for them to wear or it would have looked like Grace had a lot of "snow" in her hair in those photos!

Catherine
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