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

[lovethattink]

She is such a brave girl. I'm glad she is tube free. Thank goodness he didn't have to take her. A cross country call like that I'm sure had you on edge til you knew she was ok. So wish she didn't have to deal with chronic pain.

 

[mickeystoontown]

How'd JJ do at his therapy session and practice?

 

[lovethattink]

How'd JJ do at his therapy session and practice?

He was so nervous for therapy, but he loved the new therapist. Learned a few more calming techniques.

He made it through practice without any tics. First time since it started back up for the new school year. So that's a really good thing.

 

[mickeystoontown]

He was so nervous for therapy, but he loved the new therapist. Learned a few more calming techniques.

He made it through practice without any tics. First time since it started back up for the new school year. So that's a really good thing.

I can understand why he would have been nervous. Sounds like it turned out very well though.

Tell JJ that's I'm proud that he made it through the entire practice without any tics. That's fantastic!

 

[mommy2mrb]

He was so nervous for therapy, but he loved the new therapist. Learned a few more calming techniques.

He made it through practice without any tics. First time since it started back up for the new school year. So that's a really good thing.

was going to stop by this morning and see how JJ was doing.... happy he is having a great week and enjoyed practice and his new therapist, praying the new techniques will help him even more!


can you believe we leave in 4 weeks our MB are arriving today we can't wait to see you guys
hope you have a great weekend! we are going to a Halloween party tomorrow afternoon and then going down to my older brothers for weekend, they moved in their new house and since we won't be here for Thanksgiving will enjoy our time with them on our own!

 

[blessedmom4]

Miss you too! Yea, just heard we will get first frost Sat morn. Oh my, just realized I typed 2015...no no no thats too long! Back in 2014! 14 months away!

I am glad you don't have ot wait until 2015 to go back! YOU need your happy place.

He was so nervous for therapy, but he loved the new therapist. Learned a few more calming techniques.

He made it through practice without any tics. First time since it started back up for the new school year. So that's a really good thing.

Lisa HAS grown up a lot, but she is still my little baby.

YA for loving is new therapist, that is very important! I bet that was anxiety provoking though, good for him. I am so proud of him for that AND for a good practice. You have a busy few months with all of your company, DIS and family.

I hope you have a fabulous weekend. Praying JJ has an easy one!

 

[ladylyons]

Thanks, me too! I saw the Halloween costumes yesterday on Judy's thread. Their costumes look great! Love the Peter Pan theme. I hope you are feeling better.

Thanks! They love them and for me that's all that matters. I'm doing good. Still tired but things will start slowing down after our school carnival tomorrow. I'll just be glad when it's all over and done with.

Glad JJ likes his new therapist and that he's learning new techniques. Hope they help to keep him tick free or at least very to the very minimum.

 

[lovethattink]

I can understand why he would have been nervous. Sounds like it turned out very well though.

Tell JJ that's I'm proud that he made it through the entire practice without any tics. That's fantastic!

Will do.

Yesterday, unfortunately was not quite as good. His ticking was pretty bad. At one point he was doing a math test when his hand started ticking and he couldn't get the pencil out of his hand. I had to pry it out. He wanted so badly to finish his school work so he could go to Epcot last night and meet up with some theater friends. So he did his work verbally and I wrote it down while his hand was busy going all over the place ticking.

He finished his work, we went to Epcot...and his friends never showed. They were going to hop from MK to Epcot, but never made it over to Epcot and went home instead.

I knew something like that could happen, so I had a back up plan. We met friends of ours who are like second parents to me and dh and an extra set of grandparents to JJ and Grumpy. We had a nice time with them eating at Sunshine Seasons food court. And one of JJ's Star Wars even buddies was working at the festival center so he got to say hello to her too. The evening wasn't completely ruined, thanks to my back up plan. He didn't say it was the worse day ever, but he did say it WASN'T the best day ever and he was angry.

was going to stop by this morning and see how JJ was doing.... happy he is having a great week and enjoyed practice and his new therapist, praying the new techniques will help him even more!


can you believe we leave in 4 weeks our MB are arriving today we can't wait to see you guys
hope you have a great weekend! we are going to a Halloween party tomorrow afternoon and then going down to my older brothers for weekend, they moved in their new house and since we won't be here for Thanksgiving will enjoy our time with them on our own!

Thanks for stopping by!

He learned 4 new techniques the other day. So that brings him 10 new things to try. Most of them cannot be done in public, but there are a few that can. I noticed a big difference yesterday waiting at guest services. I could hear him playing his video game and that he was breathing in through his nose and out of his mouth slowly.

I saw the pictures yesterday on facebook. Did you two pick red and green for Christmas? Or it just worked out that way picking your favorite colors?

Enjoy your weekend. Nice you can get together since you'll miss each other on the holiday. Hope the Halloween party was fun.

Lisa HAS grown up a lot, but she is still my little baby.

YA for loving is new therapist, that is very important! I bet that was anxiety provoking though, good for him. I am so proud of him for that AND for a good practice. You have a busy few months with all of your company, DIS and family.

I hope you have a fabulous weekend. Praying JJ has an easy one!

She's such a sweetheart. Her height towers over me, she's growing up. I know she'll always be your baby.

It's nice having two different occupational therapists. They each have different ideas and those ideas sound great. They work very closely together too and left each other clear and precise notes. I think it's going to be a fantastic team!

Thanks! They love them and for me that's all that matters. I'm doing good. Still tired but things will start slowing down after our school carnival tomorrow. I'll just be glad when it's all over and done with.

Glad JJ likes his new therapist and that he's learning new techniques. Hope they help to keep him tick free or at least very to the very minimum.

I saw the carnival pictures you posted last night. Looks like they went all out. The booths looked great.

Thanks. I know I hope so too. DH gets so upset that he is still ticking and the medicines and therapy aren't a magic fix. JJ and I just take it as it comes. But I can't leave him alone for a second. The pencil in his hand while ticking yesterday could have been dangerous. Thankfully I was right beside him. So I could grab it right away and make sure he didn't hurt himself. I truly hope these tics are transient and go away soon not to come back.

 

[khaleesi]

I wish you didn't have to deal with MS. Your sense of humor about it sounds great. A 3 hours MRI, and I take it you were awake the whole time?! (JJ has been put to sleep for each of his. He had one long one in the beginning to make sure it wasn't cancerous. Thankfully it turned out to be a pocket of extra neurons.) I'm sorry there are those days where you fall apart. Are you in a good support group? Not sure if you know Belle1997. She is in some great support groups for MS and she is very inspirational herself. She does solo trips from Canada where she then meets up with (I think the Disney Divas)in Disneyland. She isn't inspiration just because of the solo trips, she's inspirational on how she lives her life, her attitude, how much she helps others, etc.

That's exactly how JJ's was. Fine one day, then BAM, everything changed. He has never complained or asked why me. He just rolls with it and keeps adjusting to a new normal. Which is ironic that he can accept those constant changes, but other changes and new things he meets with great resistance (to say the least).

Disney people are awesome!

Thanks! It's been an interesting couple of months, that's for sure. I'm actually doing very well. The main problem for me is that I have a huge needle phobia and everything I need to do involves needles. That's mainly what causes the occasional meltdowns.

I will have to look up Belle1997... I'm not familiar with her. I haven't really looked into a support group at this time. I'm kind of trying to find the happy medium between learning about the illness and not learning so much that it freaks me out completely. It's a double-edged sword.

In retrospect, we shouldn’t have even ventured out this day with JJ. But we did. And in the end, he once again declared it the best day ever.

What a rollercoaster of a day! My heart broke a little bit for him with that drawing class. But I am so happy to hear about all the ways the CMs worked to make his (and your) day better! It's stuff like this that makes me hang out on the happy trip report board and not the doom and gloom of the other boards!

It sure is. And yes.

Deb, you would have been proud of him yesterday. Our next door neighbor had a birthday party complete with a giant princess bouncy house. He wasn't invited. He could hear the girls squealing and having fun and it made him so jealous and angry to not be over there. At first he went into full blown meltdown that lasted almost two hours. Then out of the blue he calmed down and said he knows exactly how Joseph felt in the pit. He's been studying the story of Joseph this month. He was able to relate the lessons of the entire story to his feelings and use it to feel better. He made it through the next two hours of hearing the party without any problem.

What a sweetie. That gave me goosebumps!

 

[ladylyons]

I saw the carnival pictures you posted last night. Looks like they went all out. The booths looked great.

Thanks. I know I hope so too. DH gets so upset that he is still ticking and the medicines and therapy aren't a magic fix. JJ and I just take it as it comes. But I can't leave him alone for a second. The pencil in his hand while ticking yesterday could have been dangerous. Thankfully I was right beside him. So I could grab it right away and make sure he didn't hurt himself. I truly hope these tics are transient and go away soon not to come back.

Thank you! The booths are actually decorated by the parent's. If your one of the lucky few to get a booth inside it's actually one that the school supplies. Sarah's banner was put together by another mom and she did an awesome job!! I was impressed with it. She put sand along the bottom and cut out other sea creatures and it just turned out really cute! I did Jeremy's snow cone booth banner and had fun but cutting out the leaves took a long time!! The kids were able to cut some few me but some of them were really hard so I did those.

Sorry JJ had another tick last night with the pencil. That would be scary. Glad you were right there to help him and take it. That's good you were able to salvage the night at Epcot and still have a fun time.

 

[lovethattink]

On my phone. Will comment tomorrow. Staying at Disney till tomorrow. Sea world yesterday for a couple hours. New penguin attraction is very neat as long as your not claustrophobic. Just did that and trick or treat. Remember I said last mnsshp was a bust because something happened? Tonight we're trying again. 35 minute wait to get to window at GS last night, but got tickets. Went to Epcot the night before but she couldn't print them. So we are all set for tonight!

 

[WDWRids]

Have a great day and hoping MNSSHP is amazing tonite with tons of pixie dust!,

 

[annmarieda]

Hope you had a good time at MNSSHP!

 

[mommy2mrb]

Will do.

Yesterday, unfortunately was not quite as good. His ticking was pretty bad. At one point he was doing a math test when his hand started ticking and he couldn't get the pencil out of his hand. I had to pry it out. He wanted so badly to finish his school work so he could go to Epcot last night and meet up with some theater friends. So he did his work verbally and I wrote it down while his hand was busy going all over the place ticking.

He finished his work, we went to Epcot...and his friends never showed. They were going to hop from MK to Epcot, but never made it over to Epcot and went home instead.

I knew something like that could happen, so I had a back up plan. We met friends of ours who are like second parents to me and dh and an extra set of grandparents to JJ and Grumpy. We had a nice time with them eating at Sunshine Seasons food court. And one of JJ's Star Wars even buddies was working at the festival center so he got to say hello to her too. The evening wasn't completely ruined, thanks to my back up plan. He didn't say it was the worse day ever, but he did say it WASN'T the best day ever and he was angry.




Thanks for stopping by!

He learned 4 new techniques the other day. So that brings him 10 new things to try. Most of them cannot be done in public, but there are a few that can. I noticed a big difference yesterday waiting at guest services. I could hear him playing his video game and that he was breathing in through his nose and out of his mouth slowly.

I saw the pictures yesterday on facebook. Did you two pick red and green for Christmas? Or it just worked out that way picking your favorite colors?

Enjoy your weekend. Nice you can get together since you'll miss each other on the holiday. Hope the Halloween party was fun.


.

great he is using his new techniques!
happy you still had a fun night at Epcot and got to see your other friends!
its just worked out that way with our MB, didn't even think about them being Christmas colors, my fav color is red and Megan's is apple green and teal, she wanted the blue one first but thought it was more of a true blue rather than the teal!
we did have a fun weekend, the party was good and helped my SIL get the kitchen all unpacked and organized which was a big job! DB treated us to dinner and breakfast which was sweet!

On my phone. Will comment tomorrow. Staying at Disney till tomorrow. Sea world yesterday for a couple hours. New penguin attraction is very neat as long as your not claustrophobic. Just did that and trick or treat. Remember I said last mnsshp was a bust because something happened? Tonight we're trying again. 35 minute wait to get to window at GS last night, but got tickets. Went to Epcot the night before but she couldn't print them. So we are all set for tonight!

hope you had a great time at MNSSHP!

 

[momabaarjo]

I bet it will be a Magical Monday at MNSSHP!

 

[blessedmom4]

I think we talked more with you riding in the car, than we do when you are home.

How was the party? I am so happy you were able to get the tickets and I HOPE it was much better.

Yea for JJ self-soothing, that is HUGE! Tell him we are proud of him.

 

[lovethattink]

Thanks! It's been an interesting couple of months, that's for sure. I'm actually doing very well. The main problem for me is that I have a huge needle phobia and everything I need to do involves needles. That's mainly what causes the occasional meltdowns.

I'm glad you are doing very well.

Having a medical/neurological issue and a phobia to needles don't mix too well. JJ would agree with you, he hates needles. I cannot forewarn him about going somewhere he's going to need one. We go and of course it becomes the worse day ever full of tears. Although, the last time he went for a lab, went very well. He was brave.

I will have to look up Belle1997... I'm not familiar with her. I haven't really looked into a support group at this time. I'm kind of trying to find the happy medium between learning about the illness and not learning so much that it freaks me out completely. It's a double-edged sword.

I gave her a heads up to check her DIS private messages. It is a double-edged sword.

What a rollercoaster of a day! My heart broke a little bit for him with that drawing class. But I am so happy to hear about all the ways the CMs worked to make his (and your) day better! It's stuff like this that makes me hang out on the happy trip report board and not the doom and gloom of the other boards!

It's that Disney magic and pixie dust that keeps us coming back. If it was just the attractions, it would hardly be worth it.

Sunday's MNSSHP was fantastic. It was the best day ever for all three of us.

What a sweetie. That gave me goosebumps!

Thanks. I'm glad that even so young he is wise enough in that respect to use that knowledge to help himself.

 

[lovethattink]

I would surely appreciate some prayers, good thoughts and/or pixie dust for JJ. Last night at play practice they were learning their blocking and he began to have leg tics. I went up on stage to make sure he wouldn't fall off the stage. They ended up taking a break, then all eyes were on him as he was on the stage ticking. Once it stopped enough to walk he got off the stage and sat in a theater seat beside of friend of mine who watched him while I got the w/c out of the car. He was unable to finish practice.

There is another practice today. Hoping he can make it through the whole thing. The director said I may end up in costume as a spotter for him. I was planning on being back stage to keep an eye on him, not right beside him.

Hopefully once the choreography isn't so new, it will feel comfy like an old shoe and he'll be fine.

 

[mommy2mrb]

sending prayers and

 

[lovethattink]

Thank you! The booths are actually decorated by the parent's. If your one of the lucky few to get a booth inside it's actually one that the school supplies. Sarah's banner was put together by another mom and she did an awesome job!! I was impressed with it. She put sand along the bottom and cut out other sea creatures and it just turned out really cute! I did Jeremy's snow cone booth banner and had fun but cutting out the leaves took a long time!! The kids were able to cut some few me but some of them were really hard so I did those.

Sorry JJ had another tick last night with the pencil. That would be scary. Glad you were right there to help him and take it. That's good you were able to salvage the night at Epcot and still have a fun time.

Nice!

I'm so worried he's going to poke himself with it. Thankfully he hasn't been having near as many tics as he did in August.

I got to try two different soups at Epcot on Friday, pumpkin soup and mushroom. They were both very good. I was under the impression the mushroom soup was leaving to make way for the pumpkin, so I was thrilled to see both. I prefer the mushroom over the pumpkin though.