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

[ladylyons]

I know, it seems he has his good days and his bad days. And a good day can quickly turn bad, and one with a shaky start can end up really good.

Yesterday morning he and his daddy were playing when I heard him ticking from across the house. And that was how he started his day. There were no more the rest of the day! But he was tired all day.

It's tax free days in FL and I was hoping to get some clothing shopping done for him, but I'm going to have to try online. We got to the craft store to buy some soap making supplies and we went to Walmart for some school supplies. He had to use his w/c in Walmart. Too many people, lights, noise, ect.

We tried to make Walmart a quick trip. We had all the school supplies needed in the cart and he even found a big Lego set that was on sale for $17! Then we ended up a half hour in line at the check out. UGH!

His friends were in a play last night and we were going to see them, but he was done after Walmart and he couldn't make it to their play.

He handled the rule change very well. And was able to make the quick decision as to which picture he wanted signed. Keeping it consistent after this was a good move.

We all wanted to see Warwick's show again another day, but it just didn't pan out. So we were so glad we saw it that day.

I'm glad he ended up having a good day besides being tired. I swear I go through my days exhausted sometimes.

I will say I avoid Walmart as much as possible!! (Plus my nearest store is Target and I've figured it out. Any savings I'd save by going to Walmart are eaten up by the gas I'd spend getting there and home.) That's awesome he was able to get all his school supplies and a Lego set to top it off!! Nice!! Hopefully you'll able to get his school clothes ordered and still save money.

I hate the checkouts!! It always seems to be when I walk in the store no one is in line (and they'll have a ton of them open). When I go to leave their will only be like 2 - 3 check outs open and they are long! Just drives me crazy!

That is great that JJ handled it well and was able to make a fast decision.

If I hear a certain someone is making a trip to Anaheim in April 2015 I may have to find a way to get Jeremy, the baby and I down there too!! It's only about a 5 1/2 hour drive for us so I know it's a drive I can do (did it when we left DH home when we went for leap year.) My kids are awesome travelers!

 

[lsenquiz]

I think I remember reading about your spotting him at the pool in our fb group? His Segway is pretty cool. At DHS I saw him walking everywhere. But at Celebration he used his Segway.

I never saw him on a segway but that would have been totally cool. We just saw the women he was with (also a little person) on a scooter. It was definitely custom made for her which meant it was Gabriel size. Gabriel thought she was the luckiest person on earth

 

[WDWRids]

Can't wait to see the finished product for your costume!!! I think the red tutu and stockings would be the perfect addition to what you have described.

How's JJs day going today? Hopefully less tics!!! How was your Epcot day?

Back from our few days away and ready to run away again....Granddad fell again while I was gone and had an accident with the cath this am. We have a hospital bed being delivered today which should help and getting someone lined up to stay at nights to make sure he doesn't get up and wonder around. We go back to the urologist on Friday and hoping we can get some answers on his bladder and where we go from here to get some relief for him in that area. Shane goes back to the surgeon tomorrow - hopefully he will get released to go back to work. After 4 months, my man is stir crazy!!!

Praying for a great day your way!!!

 

[lovethattink]

Yesterday JJ started and ended his day with throat tics. In between, they only happened twice. So it was a relatively great day. We did go to Epcot yesterday. I didn't realize there was a Limited time magic pin at Epcot. It is for children, so JJ was lucky enough to score one! It's a little plastic pin advertising the movie Planes. Not sure why, but JJ's favorite spot to put a pin is at his belly. So that's where it went.

We did not ride Soarin'. The pins were being handed out at the entrance to the ride. We did ride Living with the Land. Everything is set up for Fast Pass Plus. JJ was using the w/c so they sent us the same way as usual, which is also the fast pass plus queue. Near the entrance to the ride the w/c line splits from the FP+ line. There was nobody using PF+ and standby was 5 minutes.

We ate at Sunshine Seasons. Dh and I had Mongolian Beef. I had mine with white rice and he had fried rice. JJ had a kids chicken leg with grapes, it came with mashed potatoes. But he wouldn't touch them with a 10 foot pole because they had chives on the top, so there was green in his mashed potatoes.

We also rode Journey Into Imagination as our first attraction. At the exit we saw a little girl playing with the lighted panels on the wall. I never realized those panels were a game. It's like a giant Simon game!

We went to the Animal Kingdom today. Last night we got a 20% off merchandise coupon on our dining receipt that was good for 8/5 or 8/6 before 1pm. I was in search of a watch for a friend. Didn't find it at either Outfitters or Island Mercantile where the coupon was good.

We discovered Wilderness Explorers! JJ loved it! We did two of the stations by the Tree of Life. He learned about Flamingoes, Madascar Hissing cockroaches, millipedes, a Grizzled Bark Mantis, tarantulas and scorpions. Boy did he have questions for the explorer guides. He really enjoyed talking to the guide Emily about the critters.

We arrived at the AK parking lot around 11 and left the park by 12:30 because he was too hot despite cooling off at It's Tough to be a Bug. Once he got to the car and we put the air conditioner on full blast he was alert and chatting away. So we made it as far as the Tree of Life and no further than that today.

I had even downloaded KTP's newest app Character Locater to my phone in hopes of seeing some characters. JJ wanted to see them, but he was too hot. We passed by the new Mickey and Minnie M&G. It's airconditioned, but there was a small line outside and he wasn't interested in being outside any more. The humidity was brutal today.

Yesterday, we got to Epcot as the afternoon thunderstorm ended. That took the edge off the heat and humidity. It was actually comfortable outside.

I'm glad he ended up having a good day besides being tired. I swear I go through my days exhausted sometimes.

I will say I avoid Walmart as much as possible!! (Plus my nearest store is Target and I've figured it out. Any savings I'd save by going to Walmart are eaten up by the gas I'd spend getting there and home.) That's awesome he was able to get all his school supplies and a Lego set to top it off!! Nice!! Hopefully you'll able to get his school clothes ordered and still save money.

I hate the checkouts!! It always seems to be when I walk in the store no one is in line (and they'll have a ton of them open). When I go to leave their will only be like 2 - 3 check outs open and they are long! Just drives me crazy!

That is great that JJ handled it well and was able to make a fast decision.

If I hear a certain someone is making a trip to Anaheim in April 2015 I may have to find a way to get Jeremy, the baby and I down there too!! It's only about a 5 1/2 hour drive for us so I know it's a drive I can do (did it when we left DH home when we went for leap year.) My kids are awesome travelers!

I can only imagine how tired you are with 3 kids and being pregnant!

Us going to Anaheim will depend on a lot of factors. But if it looks like we're going I will be sure to let you know.

I never saw him on a segway but that would have been totally cool. We just saw the women he was with (also a little person) on a scooter. It was definitely custom made for her which meant it was Gabriel size. Gabriel thought she was the luckiest person on earth

Lol, if only she would have shared with him.

Can't wait to see the finished product for your costume!!! I think the red tutu and stockings would be the perfect addition to what you have described.

How's JJs day going today? Hopefully less tics!!! How was your Epcot day?

Back from our few days away and ready to run away again....Granddad fell again while I was gone and had an accident with the cath this am. We have a hospital bed being delivered today which should help and getting someone lined up to stay at nights to make sure he doesn't get up and wonder around. We go back to the urologist on Friday and hoping we can get some answers on his bladder and where we go from here to get some relief for him in that area. Shane goes back to the surgeon tomorrow - hopefully he will get released to go back to work. After 4 months, my man is stir crazy!!!

Praying for a great day your way!!!

Today JJ did great until around 4pm. Then the tics hit full force. This time the throat tics caused both choking AND hyperventilation. They were off and on for a good half hour. Then they stopped until 7 when he had another one of the same. It's been almost a half an hour of none. Hopefully there will be no more the rest of the night.

I sure hope the doc gives you the answers you are looking for. (I just had to put the computer down. He laughed and a tic started. And now he is perfectly fine again.) I'm so sorry to read that your grandfather fell again. That's great that you all can work it out for someone to be there with him at night. I hope Shane gets a good report tomorrow about his back.

 

[kaoden39]

Score on the pin!!

Sounds like a fun well rounded day! I don't blame JJ on the chives. Scotty doesn't like that sort of thing either.

 

[ladylyons]

Nice job on the pin! Cute that he likes them at his belly. Glad you had a fun day despite the humidity. The Wilderness Trek sounds like it was right up JJ's ally!!

I can only imagine how tired you are with 3 kids and being pregnant!

Us going to Anaheim will depend on a lot of factors. But if it looks like we're going I will be sure to let you know.

I just take it a day at a time and even some days an hour at a time. I'm sure you have to do the same with JJ some days.

Well there's lots of time to plan and get everything to line up right so you can go.

 

[lovethattink]

Score on the pin!!

Sounds like a fun well rounded day! I don't blame JJ on the chives. Scotty doesn't like that sort of thing either.

I know, that was a fun surprise to stumble upon.

Typically JJ likes his foods plain. Chives didn't do it for him. The potatoes were good though. I tried them.

Is Scotty a picky eater? Or just not liking chives on mashed potatoes?

Nice job on the pin! Cute that he likes them at his belly. Glad you had a fun day despite the humidity. The Wilderness Trek sounds like it was right up JJ's ally!!



I just take it a day at a time and even some days an hour at a time. I'm sure you have to do the same with JJ some days.

Well there's lots of time to plan and get everything to line up right so you can go.

I think he puts it at his belly so he can see the pin. On his chest, he doesn't get to see it.

The Wilderness Explorers hand book is a nice thick book with lots of activities to do and things to learn. It is very well put together. I hope they keep it going this winter and fall when it's cooler outside.

Yes, and sometimes it's second by second.

I just have to overcome my feeling uncomfortable in tight places. Even the monorail makes me feel closed in. And JJ has to be doing better with his tics. They got so bad last night, that I called this morning to see if we could change his appointment to sooner. Thankfully they were able to move him closer, but I still kept his next appointment too. I can always cancel that day if he doesn't want to see him back so soon.

 

[lovethattink]

Tickets for Celebration Anaheim go on sale tomorrow. http://www.starwarscelebration.com/Anaheim/Ticketing/

 

[ladylyons]

I just have to overcome my feeling uncomfortable in tight places. Even the monorail makes me feel closed in. And JJ has to be doing better with his tics. They got so bad last night, that I called this morning to see if we could change his appointment to sooner. Thankfully they were able to move him closer, but I still kept his next appointment too. I can always cancel that day if he doesn't want to see him back so soon.

Oh No! I hope JJ is having a better day today. I agree that JJ has to be doing better with his tics. I probably wouldn't be traveling to far from home either. Glad you were able to get him in sooner.

 

[kaoden39]

I know, that was a fun surprise to stumble upon.

Typically JJ likes his foods plain. Chives didn't do it for him. The potatoes were good though. I tried them.

Is Scotty a picky eater? Or just not liking chives on mashed potatoes?



I think he puts it at his belly so he can see the pin. On his chest, he doesn't get to see it.

The Wilderness Explorers hand book is a nice thick book with lots of activities to do and things to learn. It is very well put together. I hope they keep it going this winter and fall when it's cooler outside.

Yes, and sometimes it's second by second.

I just have to overcome my feeling uncomfortable in tight places. Even the monorail makes me feel closed in. And JJ has to be doing better with his tics. They got so bad last night, that I called this morning to see if we could change his appointment to sooner. Thankfully they were able to move him closer, but I still kept his next appointment too. I can always cancel that day if he doesn't want to see him back so soon.

Scotty and the girls are all picky eaters. It drives me nuts. I have learned what to cook and not cook though. It makes it hard to vary the menu though.

 

[lovethattink]

Oh No! I hope JJ is having a better day today. I agree that JJ has to be doing better with his tics. I probably wouldn't be traveling to far from home either. Glad you were able to get him in sooner.

Today was not a good one. But there's a great big beautiful tomorrow.

Scotty and the girls are all picky eaters. It drives me nuts. I have learned what to cook and not cook though. It makes it hard to vary the menu though.

I hear you. We do the same because I hate the idea of cooking different meals for everyone.

 

[AGPrincess]

We haven't been to Star Wars Weekends in so long, but this trip report is making me want to get back! And I have four brothers who are crazy for Star Wars, so I'm sure they'd love it too. Loving all the pics! And that story of the Star Wars secret JJ kept is so sweet.

 

[lovethattink]

We haven't been to Star Wars Weekends in so long, but this trip report is making me want to get back! And I have four brothers who are crazy for Star Wars, so I'm sure they'd love it too. Loving all the pics! And that story of the Star Wars secret JJ kept is so sweet.

I hope you and your brothers get a chance to go back during SWW. Today JJ asked how long does he have to wait for the next one? "A year!?"

I'm glad JJ had the opportunity to tell him he kept the secret.

 

[momabaarjo]

It was so nice to talk to you on the phone a couple of weeks ago! I hope that your unexpected pixie dust was wonderful...

I am doing okay... not to see a ticker in my signature...but I know it is for the best! At least I get to follow along with you and JJ until Feb 2015!

 

[lovethattink]

It was so nice to talk to you on the phone a couple of weeks ago! I hope that your unexpected pixie dust was wonderful...

I am doing okay... not to see a ticker in my signature...but I know it is for the best! At least I get to follow along with you and JJ until Feb 2015!

Yes, it was nice talking to you. Yes, it was amazing. The timing was perfect too. Because the last three days his tics have been particularly nasty.

I'm so sorry the shin splints have been so severe that you totally had to pull the plug on the race and a trip.

With Feb 2015 be another family trip?

 

[lovethattink]

JJ's tics are really interrupting his life right now. The neurologist was able to squeeze us in on Wednesday. Meds were changed around again and his tics got even worse. Possibly as a result of the increased medication? Gave another call to the office yesterday, another dose change. Yesterday was better until last night. At first his tics changed to tics you would typically think of as vocal tics. But then they went back to the choking and hyperventilating. And just before bedtime, his legs started. They were kicking up a storm and I was trying so hard to get him a softer surface because he was on our ceramic tile floor. I put towels and rugs under his legs, whatever I could grab within reach. Once it stopped we moved to a carpeted floor. He started again and this time his whole body was affected. When I talked to the neurologists office yesterday they said to give this change of meds til Monday and call back.

Tuesday when I had called I was asked to stop all red dye, caffeine, high fructose corn sypup, juice only once a day, no Gatorade or Power Aid. He may have vitamin water instead. And to give him 500mg of calcium in the morning and 200mg of magnesium at night.

We are still hunting for a 500mg of a chewable or liquid calcium. The NP said no tums. Dh came home with a chewable caramel type calcium and JJ hates caramel. He gagged. The magnesium we found is a powder form we mix with water. It is orange flavored. He had no problems drinking that one.

If anyone reading knows where to find a chewable, powder, or liquid calcium supplement with 500mg elemental calcium? Please let me know.

 

[momabaarjo]

It makes me so sad to think of JJ suffering through this...and then I cant imagine what your whole family is dealing with.

I wish I had a calcium supplement for you...I know there are chocolate chews...but I think I remember he cant do chocolate. Could you go to a compounding pharmaist and see if they could compound what you need with a flavor JJ likes?

I am glad the trip was a good one!

As for the 2015 PHM...I am not sure who is going. Amy and I are going with her daughter Erin and of course my Ab.

 

[jane2073]

I just did a quick google search and this is the first one that came up but it looks promising-vanilla sunday!

http://www.vitacost.com/natures-plus-animal-parade-childrens-chewable-calcium

 

[khaleesi]

Awww, poor JJ Channeling the power of the Force for him!

The Wilderness Explorer thing looks really cool. Doubt it will still be around in February, but I guess we'll see!

 

[lovethattink]

It makes me so sad to think of JJ suffering through this...and then I cant imagine what your whole family is dealing with.

I wish I had a calcium supplement for you...I know there are chocolate chews...but I think I remember he cant do chocolate. Could you go to a compounding pharmaist and see if they could compound what you need with a flavor JJ likes?

I am glad the trip was a good one!

As for the 2015 PHM...I am not sure who is going. Amy and I are going with her daughter Erin and of course my Ab.

He's having problems with tics all morning. Thankfully none of the choking kind. His fingers on his right hand his writing hand, keep moving like they are playing the piano. His legs start kicking and he can't stop it. Sometimes his whole body then starts moving. For a while his tongue was going in and out of his mouth. Then his teeth started biting open and closed over and over. My Mama instincts can't help but wonder if it couldn't be simple partial seizures instead of tics? I know on VEEG the choking episode he had wasn't a seizure.

I just did a quick google search and this is the first one that came up but it looks promising-vanilla sunday!

http://www.vitacost.com/natures-plus-animal-parade-childrens-chewable-calcium

Thanks for the link.

Awww, poor JJ Channeling the power of the Force for him!

The Wilderness Explorer thing looks really cool. Doubt it will still be around in February, but I guess we'll see!

Thanks. I sure hope it will stay around a while.