Come to the Dark Side...We Have Cookies...(updates 4/3)

[kaoden39]

What's an opening night without glitches? I think that there are supposed to be glitches. But, seriously I hope that JJ feels better today. Poor guy.

 

[ladylyons]

Hope JJ didn't have any issues today or tonight. Glad he started feeling better!

 

[lovethattink]

We started our day yesterday with JJ sick to his stomach at the wee hours of the morning. All he had in his stomach for the matinee show was jello and gingerale. I think it was a combination of stage jitters and the heat effects from the night before.

Yesterday's shows went amazingly well. The kids all did great. For the first time ever, I won the raffle. It was a Father's Day basket from Goodyear Tires. Not sure what all is in it, but they said over a $100 value. So Happy Father's Day to Goofy.

After the show there was a meet and greet outside. JJ wasn't able to finish either of them. He came up to me and said he has to go inside. But he made it through the show! I had contacted one of the back stage people and we discussed the temperature of the green room. He suggested turning the air conditioner on before the actors arrive and keeping the women's dressing room curtain open once all the girls are dressed. It helped a lot. The room was 62 degrees when we entered. We froze, but once all the actors arrived and filled the green room, the temp went up considerably and even got a bit toasty towards the end.

Goofy and Grumpy were very impressed with the musical. They were surprised at how much choreography was involved in JJ's scenes and how he was able to remember it all. He was the smallest dog up there.

I am almost done with the photopass pictures. I'm somewhere around 1500 of the 2000+ pictures.

sorry I've been MIA here was a crazy couple of weeks with Megan's schedule!

sorry about the a/c issue, happy you got it fixed!
poor JJ having a seizure and overheating during the performance, hope tonight will be cooler for him and everyone else!

The end of the school year is always busy, especially when you add in all the extra things Megan is doing. I understand completely.

Yesterday was much cooler in the green room. He is in 2 scenes and the final bow. So he spends most of the time in the green room.

What's an opening night without glitches? I think that there are supposed to be glitches. But, seriously I hope that JJ feels better today. Poor guy.

Thanks, he had a much better day yesterday. He is still sleeping now. I'm letting him sleep as long as he wants. Those two shows wore him out.

Hope JJ didn't have any issues today or tonight. Glad he started feeling better!

The two shows went great!

 

[kaoden39]

We started our day yesterday with JJ sick to his stomach at the wee hours of the morning. All he had in his stomach for the matinee show was jello and gingerale. I think it was a combination of stage jitters and the heat effects from the night before.

Yesterday's shows went amazingly well. The kids all did great. For the first time ever, I won the raffle. It was a Father's Day basket from Goodyear Tires. Not sure what all is in it, but they said over a $100 value. So Happy Father's Day to Goofy.

After the show there was a meet and greet outside. JJ wasn't able to finish either of them. He came up to me and said he has to go inside. But he made it through the show! I had contacted one of the back stage people and we discussed the temperature of the green room. He suggested turning the air conditioner on before the actors arrive and keeping the women's dressing room curtain open once all the girls are dressed. It helped a lot. The room was 62 degrees when we entered. We froze, but once all the actors arrived and filled the green room, the temp went up considerably and even got a bit toasty towards the end.

Goofy and Grumpy were very impressed with the musical. They were surprised at how much choreography was involved in JJ's scenes and how he was able to remember it all. He was the smallest dog up there.

I am almost done with the photopass pictures. I'm somewhere around 1500 of the 2000+ pictures.






The end of the school year is always busy, especially when you add in all the extra things Megan is doing. I understand completely.

Yesterday was much cooler in the green room. He is in 2 scenes and the final bow. So he spends most of the time in the green room.





Thanks, he had a much better day yesterday. He is still sleeping now. I'm letting him sleep as long as he wants. Those two shows wore him out.



The two shows went great!

I hope the sleep in helped JJ and that he feels better today.

 

[lovethattink]

I hope the sleep in helped JJ and that he feels better today.

He's had a pretty good day. He slept until 30 minutes before we had to leave for the theater. He did have one of those choking spells. It lasted a little over 2 minutes. Thankfully nothing since.

 

[ladylyons]

Glad he's feeling better. Sounds like the sleep and keeping the green room cooler really helped. Hope you have a great week! This is our first full week of summer vacation and I don't know what we're going to do yet. Probably just go day by day and see what we feel like doing and how hot it gets.

 

[lovethattink]

Yesterday was the last public performance for JJ. There are two private performances for summer camps left.

On Saturday night, DH helped JJ to fold his clothes and put them away. Each actor had a spot on the counter for their costume, their name was on a sticker above their spot. Dh put the costume into his bag and placed his bag at his spot.

When we arrived yesterday, his bag was GONE. I searched the men's dressing room. The stage manager searched the dressing room. Nothing. It apparently got legs and walked out. However, each day something was always missing from his bag. And I was the one who folded the clothes and put them in there, then pulled the draw string to close it, on all the other days. So I know everything was in there each day. So either someone was playing a joke on him, or someone took the bag by accident, or someone moved it. But yesterday it was MIA.

There were tears. Lots of them. I talked with the stage manager and make-up artist. They kept an eye on him while I ran home to get the same color clothes for him to wear. I got a bag ready to go when a text came through that the bag was found. I asked where, and was texted back that someone found it. That was all the explanation I got. He was all dressed and ready for the show when I got back to the theater.

There will be a DVD of the performance. Yay! I was trying to find the costumer who was collecting the money for the DVD. I opened my mouth about his missing costume, but she stopped me and told me that JJ not wearing his collar on stage on Saturday made her look bad as a costumer.

I told her about the problems he had on Friday night from the heat and the collar and she said that he overreacts. I went into Mama Bear mode and told her she has no idea what's happening with him. She said that I was raising my voice and I told her that she's made me angry. Then she said that I was overreacting. Which angered me even more.

She has no idea what we have been through the last 3 years. It was Father's Day 2010 when JJ stopped breathing and dh had to administer CPR until the ambulance arrived and they took over. Our lives have been turned upside down with everything that's happened since. I can probably count the number of nights I've had a full night's sleep on one hand. Not many night's have gone by where he isn't choking on his saliva and I have to turn him on his side so it goes on the pillow instead of down his throat. The whole thing with the collar in part could be sensory, but he has horrible red marks on his neck from the collar. She said the newest collar gave him two more inches than the first, but it is still tight. She insists it's loose.

I agreed to let him wear it only for his scenes but that he should take it off as soon as it bothers him. (Friday night he had so many of those choking spells after we got home, that I am not willing to repeat that all over again.)

It came to his first scene, and sure enough, he had his collar on. However, there were 5 other dogs who did not. His last scene came up and once again his collar was on, but there were a couple other dogs who did not have their collar on. Last night right after we got home, he had one of those choking incidents. Thankfully no more after. During the night I had to turn him on his side twice because he was choking.

Today we are going to Disney to try to find some Aristocat merchandise. I'd like to give something extra to the stage manager and the make-up artist who have taken him under their wing. He wants to make them Death Star soap. He has just one mold, so he'll have to make one before we go to Disney, then the other when we get home. I'm thinking maybe DTD will have something Aristocat. What do you think? I don't want a stuffed animal. I'm thinking maybe paper, pen? Bookmark? Maybe TrenD will have something?

Glad he's feeling better. Sounds like the sleep and keeping the green room cooler really helped. Hope you have a great week! This is our first full week of summer vacation and I don't know what we're going to do yet. Probably just go day by day and see what we feel like doing and how hot it gets.

Thanks. I let him sleep in again yesterday. I had 30 minutes to get him bathed, breakfast and dressed before heading out to the theater.

Enjoy your first day of summer vacation.

 

[pwdebbie]

My goodness, that costumer needs a reality check. She's worried that she looks bad??? Aw, poor thing. Sorry, but that is just so selfish and self-centered of her. She should be more interested in the kids' welfare if she wants to work in productions involving children. I'm so sorry you had to deal with that person. Is she the one that removed JJ's costume bag?

I haven't followed JJ's story from the very beginning. Was it just a fluke that he had that first event on FD three years ago or had there been an injury or head trauma or something earlier in the day? I hope you don't mind me asking. If I'm out of line, slap me upside the head.

I sure hope they can figure out what is causing these swallowing episodes soon and get it under control. It must be scary to watch your child go through this stuff and frustrating to not be able to fix it.

 

[mickeystoontown]

Oooh, I just wanna come down there and knock a knot on that woman's head! She's more concerned about how she will look than the safety and comfort of a kid? Makes me furious!

I hope that you'll figure out what's causing JJ's choking spells soon. I know that it has to be scary for you.

 

[lovethattink]

My goodness, that costumer needs a reality check. She's worried that she looks bad??? Aw, poor thing. Sorry, but that is just so selfish and self-centered of her. She should be more interested in the kids' welfare if she wants to work in productions involving children. I'm so sorry you had to deal with that person. Is she the one that removed JJ's costume bag?

I haven't followed JJ's story from the very beginning. Was it just a fluke that he had that first event on FD three years ago or had there been an injury or head trauma or something earlier in the day? I hope you don't mind me asking. If I'm out of line, slap me upside the head.

I sure hope they can figure out what is causing these swallowing episodes soon and get it under control. It must be scary to watch your child go through this stuff and frustrating to not be able to fix it.

There is a possibility that she had no clue whatsoever about JJ's problems on Friday night.

I don't mind you asking about JJ.

As baby on up he always made sucking and chewing noises in his sleep. The neurologists tell us that those were probably seizures. But we had no clue. Out of the blue on Father's Day 2010 he had a grand mal seizure that changed everything as we knew it. It was as if a switch was thrown in his brain that totally changed his personality, suddenly he had heightened senses, fits of rage, impulsivity, lack of inhibition, he could no longer go up and down stairs, his balance was off, he couldn't remember things, etc.

Leading up to this day three things had happened. At school he was hit on the head with a Frisbee during PE (early May). A couple weeks later, he was standing in front of the bleachers at Grumpy's football game when the boys ran off field and knocked him flat to the ground (late May). He seemed perfectly fine, and showed no signs of injury. And shortly after that, my parents who spent the winter with us, headed up north. My dad had a series of brain bleeds on the way home and ended up life flighted to a hospital in Richmond, VA (early June). The stress of that took a toll on all of us.

It was June 20, 2010 when I walked by JJ's bed and noticed he was breathing funny. By the time dh got there from his bed, he was not breathing at all. I called 911 as he started cpr. (He had just been certified days before.) The ambulance arrived within two minutes, but they were the longest two minutes of our lives. They took over, dh went with them in the ambulance. I drove our car to the hospital.

The ER doctor told us he had a seizure. They did a CT scan and saw nothing so within an hour of our arrival we were sent home with orders to make an appointment with a neurologist. The ER doc said that most people will have one seizure in their lifetime, but chances of a repeat was slim.

I called Monday morning for an appointment with the pediatric neurologist they had suggested. There were no openings for 3 months. So I got put on a wait list. Very early the next morning he had a seizure again. I called my neurologist and he arranged for more staff to come in and he saw JJ right away and started him on medicine. And gave us an order for an MRI with sedation and an order for an EEG.

I was in the room for the EEG and the technician talked to me. I knew a little about brain waves and what I was seeing did not look like we learned in text books. I mentioned something to her and she said something was going on with the right side of his brain.

I talked to a nurse aesthesis friend and she told me that he should go to a children's hospital to have it done. So I called All Children's in Tampa and they said it was too complicated for them that he had to go to the main hospital in St. Pete to have it done.

I told them about the right side of the brain. So they made sure to focus intensely there. They found something but didn't know what. They told me that we would get results in 4 to 6 weeks. It was much less than that when we got a phone call that he needed to go back for another MRI. They had found a lesion. We were told it could be cancerous, but there was a test they could do during another MRI that would help us know. Went back for that test. Told another 4 to 6 weeks for results. Again it was less than that.

My neurologist who JJ was seeing, just happened to do his residency at Boston's Children's hospital and he saw this exact thing before. He reviewed the MRI and said that it was Cortical Dysplasia, a pocket of extra neurons. These neurons were sending out signals to the rest of the brain that it didn't understand and caused seizures. There was no injury from the Frisbee or the tackle. This was something that would have happened when his brain was being formed in the womb.

This lead us to occupational therapy and physical therapy for the sensory and balance. However, due to insurance and minimal goals, they discharged him from therapy. Funny how they gave us papers inches thick to work on at home after he was no longer their patient.

He also went for extensive neurocognitive testing. This was the hardest report to read as there were so many issues addressed in the evaluation that he never had problems with prior.

Unfortunately, this neurologist didn't treat aggressively enough and JJ ended up with the kindling effect. Having seizures all the time. Thankfully, he referred us to a pediatric epileptologist who has been able to get him more on track and have less seizures.

With these new developments of choking in the day time, this new doc is sending him for a video EEG in July to see if things have changed since the last one he had over a year ago March.

 

[WDWRids]

So glad the remainder of the shows went well (minus the costumer and missing bag)!! Can't believe the costumer was more concerned with how she looked than the wellbeing of a child. Hooray for JJ on his awesome job with all the dance moves!! Like the idea of a token of appreciation for the stage manager and makeup artist. They sound like pretty amazing individuals. Good luck in finding something.

I can't imagine what it was like three years ago for you and your husband. How frigthening to experience JJ's first seizure and having to do CPR then going through all the stages of determining what was the cause. Hope they can find out the reason for the choking and are able to give JJ some relief from them.

WOW that's alot of pictures!! Can't wait!! I have to say, everytime I see anything with Star Wars I immediately think of your wonderful family and the love JJ has for Star Wars.

Have a great day!!

 

[lovethattink]

Oooh, I just wanna come down there and knock a knot on that woman's head! She's more concerned about how she will look than the safety and comfort of a kid? Makes me furious!

I hope that you'll figure out what's causing JJ's choking spells soon. I know that it has to be scary for you.

I wish you would have been here. I was taken by surprise at the rudeness.

Friday night was the scariest when we got home and he had a bunch of them. After discussing it with DH he said to give the "magic pill". It all stopped after he had that medicine.

So glad the remainder of the shows went well (minus the costumer and missing bag)!! Can't believe the costumer was more concerned with how she looked than the wellbeing of a child. Hooray for JJ on his awesome job with all the dance moves!! Like the idea of a token of appreciation for the stage manager and makeup artist. They sound like pretty amazing individuals. Good luck in finding something.

I can't imagine what it was like three years ago for you and your husband. How frigthening to experience JJ's first seizure and having to do CPR then going through all the stages of determining what was the cause. Hope they can find out the reason for the choking and are able to give JJ some relief from them.

WOW that's alot of pictures!! Can't wait!! I have to say, everytime I see anything with Star Wars I immediately think of your wonderful family and the love JJ has for Star Wars.

Have a great day!!

Thanks. He is also busy making soap for one of the stage crew who likes Star Wars. Looks like some people are getting death stars. I know the makeup artist loves star wars so she'll get one of them too. They take a long time to make because there are three bars of soap involved in making them and it takes time to cool in the mold.

I appreciate you thinking of us. Loved the Darth Vader you snapped a picture of in Vegas.

The last three years have been quite a trial. My vocabulary has increased, I've become a better advocate for my child and others, and we have been able to help quite a few families find JJ's new doctor for their child with big improvements for them.

Surgery is always an option for JJ. But with only 70% success rate for 2 years of seizure free, we just don't feel comfortable with that option at this time. We were also told there could be dormant areas in his brain that won't surface until after surgery.

 

[mickeystoontown]

Thank you for sharing JJ's story. Many people do not realize just how badly seizures/epilepsy can effect not only the patient but the entire family. It definitely changes the way you see and do things.

 

[kaoden39]

I want to slap the costumer too. I don't care if she knows JJ's situation or not. He is a child and he was uncomfortable. Obviously her collars were uncomfortable otherwise all of the kids would have kept them on.


Thank God you caught JJ in time. I pray that this new EEG helps to find a way to make life better for JJ.

 

[momabaarjo]

I am glad you went momma bear on the costumer...geez the lady needs to get a clue. These are kids not trained professionals...

So sorry about the bullying...you know how I feel and stand on that issue. I no longer hold my tongue and I go straight to parents...I don't even care anymore what they might think...momma bear! Thank goodness that chapter of our lives is closed (for the moment). And to think of someone bullying JJ...that makes me the maddest...one of the sweetest, gentlest, kind hearted kids...the bulliers need a tanned bottom.

 

[lovethattink]

Hip Hop class was tonight. Going up the steps to class, JJ had one of those choking spells. He sat out most of the class. He has been fine since.

I'm still working on my photopass pictures. New pictures appeared that weren't there before. I have until the 20th to place the order, so I need to get a move on.

Thank you for sharing JJ's story. Many people do not realize just how badly seizures/epilepsy can effect not only the patient but the entire family. It definitely changes the way you see and do things.

Yes, it changed many things. The seizures topped with all his sensory issues was a difficult adjustment since it all came on so suddenly.

I want to slap the costumer too. I don't care if she knows JJ's situation or not. He is a child and he was uncomfortable. Obviously her collars were uncomfortable otherwise all of the kids would have kept them on.


Thank God you caught JJ in time. I pray that this new EEG helps to find a way to make life better for JJ.

He is on his third collar, the first was so tight I got a message from my friend that he was not doing well that I needed to come in to him, this was Wednesday. The second irritated his skin so badly that he had a red ring all around his entire neck. This was Thursday, he had no breathing problems, but he was very red. This third one is 2 inches bigger and made of soft ribbon. I can squeeze one of my fingers in between his neck and collar. It still made his neck red, but only at two spots and not nearly as bad as the 2nd collar. This is the collar he had the problems with on Friday along with the over heating. Saturday he did not wear a collar at either performance with permission from one of the staff. He wore it again for Sunday's performance. He was told by the stage manager to take it off if it bothers him and to give it to her so it doesn't get lost. He did much better knowing he could take it off if it bothered him. Plus the green room was a decent temperature.

I hope we get some answers with the VEEG too. He loves this test. He gets to eat all the junk food he wants, play all the video games he wants, etc. to see how he responds to them. There will be a strobe light test and a blowing test.

 

[lovethattink]

JJ is busy making soap at the moment. He needs to be in bed because call is early tomorrow. He said that he is making soap for

I am glad you went momma bear on the costumer...geez the lady needs to get a clue. These are kids not trained professionals...

So sorry about the bullying...you know how I feel and stand on that issue. I no longer hold my tongue and I go straight to parents...I don't even care anymore what they might think...momma bear! Thank goodness that chapter of our lives is closed (for the moment). And to think of someone bullying JJ...that makes me the maddest...one of the sweetest, gentlest, kind hearted kids...the bulliers need a tanned bottom.

Dh and I are his biggest advocates.

I know you went through a lot with the bullying.

I'm back stage with a friend of mine during both performances tomorrow. So I can keep an eye on him when he's in the green room. His costume, minus the collar, are at home. Made sure it won't go missing like it did on Sunday.

 

[ladylyons]

WOW! I think that costumer needs an attitude adjustment!! Not right to put down a child regardless of the situation. If my child told me it was bothering them guess what they wouldn't be wearing it either!! JJ's situation sounds a little worse cuz it could have possible been causing other problems. I hope not but unfortunately you never know.

I really hope his next test reveals some answers. Glad he was able to get some more rest.

 

[mommy2mrb]

wow what a rude lady, no reason to be treating JJ or you that way!

hope he had a restful night and enjoys doing the play today!

 

[lovethattink]

13 choking episodes since 4pm yesterday. I video taped the end of one. It's seizure. Called both ped and neuro. Have to call back at 8am . They are going to try to fit him in for an appt or veeg earlier. Today for veeg if there's an opening. I'll post back when I know more.

Almost done with the photopass edits.