Come to the Dark Side...4 Weekends of Fun with the Force(Updated 11/12)

[lovethattink]

My ticker is difficult to read or the wrong number is up? But a week from today we check in.

I called disabilities today to see if we could get 1st floor guaranteed. They couldn't help because my reservation was with convention services. I was transferred over there. I asked the cm if we could get 1st floor guaranteed, because I didn't trust being in an elevator filled with people with JJ's wild tics. I also asked if there was a roll in shower available. He said no roll in showers available in a room with 2 queen size beds. He said since I had a preferred room, he found one that would be first floor, no roll in shower, but had handles at the tub. He put me on hold while he said he was talking to someone behind the desk at CSR. He said the room was locked in, 1st floor, no roll I shower, but he requested a transfer bench. I asked if this would still be in the same area and he said it should be in the Casitas.

I got an email notification later this afternoon about the room change. Much to my surprise it was also changed from preferred to standard view.

I called back. Was transferred to a half dozen people. Until I ended up with someone at convention services who said that yes indeed. It was changed to standard view because my requests brought about a new reservation. She said it's the same price since it's the convention rate.

So do you think I should do online check-in if the room is locked in as he said? Or will I mess things up even more if I do online check in?

 

[lovethattink]

It's the little nice things that someone does that seem the best sometimes.

Yes, sometimes it's the small things that mean the most.

Like the other day I got in the shower to a big smiley face made out of Sponge Bob Square Pants foam. JJ left a smile behind.

That same day, he said he loved my hair. He said it looked just like Elvis', rofl. He was so serious and it took all I had not to laugh. And the funniest part was every time I passed a mirror, I looked and tried to figure out how he was seeing my hair look like Elvis.

 

[Millie12591]

Bless his little heart!

JJ is amazing, I'm so impressed he knew what was coming. Do you think it was the heat or are you still blanking on what is causing it?

I'm glad he had fun up until then, God love him.

Sounds like the heat is what had all the babies/kids having melt downs.

 

[ladylyons]

Glad you guys were able to have a fun time. That's great JJ was able to tell you he was going to tic before it happened so you get him to First Aid.

Hope your able to have a nice, relaxing, low (or no) tic weekend. Continued prayers.

 

[DisneyMom0115]

Glad you guys were able to have a fun time. That's great JJ was able to tell you he was going to tic before it happened so you get him to First Aid.

Hope your able to have a nice, relaxing, low (or no) tic weekend. Continued proputhi























Ghguipot

 

[lovethattink]

Bless his little heart!

JJ is amazing, I'm so impressed he knew what was coming. Do you think it was the heat or are you still blanking on what is causing it?

I'm glad he had fun up until then, God love him.

Sounds like the heat is what had all the babies/kids having melt downs.

Camille, it seems like ANY little stressor on his body is causing. So yes, the heat played a role. You should see him before we start school work. He's always been worried it will be difficult. When he has the urge to go to the bathroom it brings them on. After he eats or drinks he gets them. Suspense in a tv program or a video game. And when he begins to relax and things are calm they seem to come out in full force. The only time he doesn't have them is in his sleep.

Last night while he was having one he was also seeing flashing lights and his hand fell asleep. So that sounds like something else is going on too. I'll be calling the neuro office again Monday to report that. Or if it happens again sooner, then I'll be calling before Monday.

He had a blast that day at the MK. He can't wait to go back.

Glad you guys were able to have a fun time. That's great JJ was able to tell you he was going to tic before it happened so you get him to First Aid.

Hope your able to have a nice, relaxing, low (or no) tic weekend. Continued prayers.

Yes, most of the time he knows it's coming. But sometimes they come right away. Yesterday all day he had ones that affected his full body. He was in the kitchen telling me something when one came on. I can't carry him. He weighs around 100 pounds. His feet were kicking like crazy and he was determined to get off the ceramic tile floor. I guess my adrenaline kicked in because between the two of us he got to the couch. And his whole body went wild.

"ladylyons;49374056" Glad you guys were able to have a fun time. That's great JJ was able to tell you he was going to tic before it happened so you get him to First Aid.

Hope your able to have a nice, relaxing, low (or no) tic weekend. Continued proputhi

Ghguipot

 

[pwdebbie]

That just sounds so terrible. JJ is going through so much. I'm sorry that things seem to keep getting worse. Praying for JJ. And praying for you, I don't know how I would handle seeing my kids (well at this point, grandkids) go through this.

 

[lovethattink]

That just sounds so terrible. JJ is going through so much. I'm sorry that things seem to keep getting worse. Praying for JJ. And praying for you, I don't know how I would handle seeing my kids (well at this point, grandkids) go through this.

I was doing well until yesterday. I'm so glad Grumpy is home and school hasn't started yet. He has been so great. He hung out with JJ while I had a little cry fest.

We are going to Disney this weekend for Mustangs at Mickyard. I'll probably spend most of the time in the room with JJ. However, Grumpy decided he wants an annual pass this year! He is so concerned about his brother. For the first time in ages they are getting along. He is showing so much more patience towards him. Dh is worried sick about JJ. He is hovering over him when he's home. And that is making JJ more anxious. JJ wants to play and do all the things he was use to doing.

So far today he hasn't had a single tic!

 

[lovethattink]

I went ahead and did online check in. 6 more days!

 

[ladylyons]

Yes, most of the time he knows it's coming. But sometimes they come right away. Yesterday all day he had ones that affected his full body. He was in the kitchen telling me something when one came on. I can't carry him. He weighs around 100 pounds. His feet were kicking like crazy and he was determined to get off the ceramic tile floor. I guess my adrenaline kicked in because between the two of us he got to the couch. And his whole body went wild.

Oh no! Yeah when you have the adrenaline pumping you do seem to be able to do things you normally wouldn't be able to. Continued prayers!

 

[lovethattink]

Oh no! Yeah when you have the adrenaline pumping you do seem to be able to do things you normally wouldn't be able to. Continued prayers!

Yes. Thanks appreciate the prayer more than you know.

 

[mommy2mrb]

continued P & PD for you all!
so wonderful Grumpy is being so kind and patient with JJ you raised him right Tink!

hope you get the room you requested! and can have a fun weekend!

 

[WDWRids]

Checking in and catching up.... Loved the pixie dust with the extra set of cards!! Sounds like you had a great day until his tic came. At least he can tell you they are coming. My heart just aches for him.....for him to have to go through these changes he doesn't understand while he just wants to be doing activities for his age. My heart aches for you and DH.....please find comfort in knowing lots of people care about your family and are lifting you up in prayer!!

 

[Millie12591]

I went ahead and did online check in. 6 more days!

Where are you staying again?

 

[lovethattink]

continued P & PD for you all!
so wonderful Grumpy is being so kind and patient with JJ you raised him right Tink!

hope you get the room you requested! and can have a fun weekend!

Thanks for the prayers and pixie dust.

It's so nice they are getting along and Grumpy is showing patience with him.

I have no plans and very small expectations for the weekend. I know there's no way we can take JJ to the car show in the afternoon. But there is one in the evening and that will be a possibility. I'm glad we didn't sign up for the BBQ, Laua, Illuminations Dessert, etc.

Checking in and catching up.... Loved the pixie dust with the extra set of cards!! Sounds like you had a great day until his tic came. At least he can tell you they are coming. My heart just aches for him.....for him to have to go through these changes he doesn't understand while he just wants to be doing activities for his age. My heart aches for you and DH.....please find comfort in knowing lots of people care about your family and are lifting you up in prayer!!

Glad you liked the update. It was fun for us until the end.

I'm glad he knows when they are coming. But he doesn't always tell us. He tries really hard to fight them. The last two nights were filled with very strong ones that affected his whole body between 8pm and 9pm when his medicine was due. I'm so glad he was on the couch because we have a very soft couch and he was banging his head so hard. Today has been a very good day for him. He's had a bunch of tics, but nothing where his whole body goes wild. Today his leg kicked a bunch of times. Loud, sudden noises came from his mouth. At voice lessons, he hyperventilated from a throat tic.

Where are you staying again?

We texted about this earlier today.

 

[lsenquiz]

Caught back up. I think it is awesome that you still manage to do so much even with JJs disabilities. I hope your upcoming appointments go well and JJ gets the occupational therapy he needs.

 

[lovethattink]

Caught back up. I think it is awesome that you still manage to do so much even with JJs disabilities. I hope your upcoming appointments go well and JJ gets the occupational therapy he needs.

He did get into OT! He had his evaluation and his first session. He is on a regular schedule for 30 minute sessions.

It took us a while to find out about all the opportunities for him. Last week he missed his first acting class of the year. He was not well at all that day. Hopefully next week he will be able to return weekly.

 

[WDWRids]

Hi! Just checking in to see how things are. Hoping all is well today!

 

[lovethattink]

Hi! Just checking in to see how things are. Hoping all is well today!

Last week was absolutely horrible. His tics were so severe. Wednesday night another medicine was added to try to lessen the severity of the tics. Friday he went for another VEEG. The added medicine must be doing it's job because he has had very few tics since. And those weren't even close to the intensity of Wednesday's and Thursdays. So it looks right now, like he's on the right combination of medication.

Things were so good this weekend that our stay at CSR went well. He even got to swim today with a life jacket on. Last week, I didn't think that would be a possibility this weekend. Granted it wasn't for long, but he had so much fun with the time he was able.

 

[mickeystoontown]

Last week was absolutely horrible. His tics were so severe. Wednesday night another medicine was added to try to lessen the severity of the tics. Friday he went for another VEEG. The added medicine must be doing it's job because he has had very few tics since. And those weren't even close to the intensity of Wednesday's and Thursdays. So it looks right now, like he's on the right combination of medication.

Things were so good this weekend that our stay at CSR went well. He even got to swim today with a life jacket on. Last week, I didn't think that would be a possibility this weekend. Granted it wasn't for long, but he had so much fun with the time he was able.

Praise God! I hope that this new combination continues to lessen the tics. I can' hardly wait to see how the trip went.