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

[momabaarjo]

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.

Hope they can find some answers or at least some kind of relief for JJ!

 

[WDWRids]

I do hope they can determine what has changed to cause him to have these new seizures and can help get them under control! Poor JJ..... my heart goes out to all of you today.

 

[mickeystoontown]

Michelle, hope that the tests get scheduled soon!.

 

[pwdebbie]

Thank you for the detailed explanation. He has been through so much! And you a are a good mama bear.

Praying for him today.

 

[ladylyons]

Prayers for JJ and the rest of your family too!

 

[blessedmom4]

You KNOW I am praying!!!!! Thank you for the email.

 

[lovethattink]

You KNOW I am praying!!!!! Thank you for the email.

Thank you! Appreciate the prayers.

Hope they can find some answers or at least some kind of relief for JJ!

JJ has an appointment on Monday. Hoping to get some answers then. He he had one episode on Tuesday and two yesterday afternoon. None since. Hoping it stays that way.

I do hope they can determine what has changed to cause him to have these new seizures and can help get them under control! Poor JJ..... my heart goes out to all of you today.

Thanks. I sure hope so too. I appreciate your prayers and your message. Things have been too hectic here to call, but I do appreciate your offer.

Michelle, hope that the tests get scheduled soon!.

Thanks. Monday we should get some answers. I appreciate all your support on Wednesday.

Thank you for the detailed explanation. He has been through so much! And you a are a good mama bear.

Praying for him today.

Yes, we've all had quite a journey these last few years. Appreciate the prayers.

Prayers for JJ and the rest of your family too!

Thanks. Appreciate the prayers and praying for your requests as well.

 

[ladylyons]

Thank you and I did get really great news today so I'll hopefully be able to share in a couple weeks. Hope you also get some answers on Monday.

 

[annmarieda]

Michelle, I am so sorry to hear about all that has been going on!!! It seems like you have had quite the June!

That gal shouldn't work with kids...how mean to say what she said.

And the bullying! I agree with Tammie... some children need a swift kick in the rear. Tammie mentioned going straight to the parents.... or how bout the kids? I know it isn't a popular notion in todays world... but remember when we were all kids? I know I kept myself in check in part because there were adults everywhere and I knew if I stepped out of line someone would let me know. I took this approach years ago when a girl decided to behave wickedly to my dd. I pulled her out of religious ed classes (yes, this bullying was going on during religious ed) I gave her a good talking to... and not in the "can't we just play nice" sort of way but more in the "does it make you feel good about yourself, cause guess what..." sort of way. I know...maybe not the nicest... but she and her little group NEVER bothered my dd again.

JJ... I appreciated you sharing your story. I had never heard it before. Funny how things can change in an instant like that. I mean... you always hear that it can... but then it happens to you. Your world view is going one way and all of a sudden something hits and your course is forever changed. I do hope and pray that you not only find some answers in this next round of tests, but that he feels better soon. I am sure that all of these episodes are taking their tole on not only him... but you and your entire family.

 

[lovethattink]

I finished editing and placed the order for the photopass cd (over 2000 pictures). So nice to see that credit in there for the cd and only have to pay for shipping at this time. I definitely recommend pre-ordering the cd when you can get a discount.

We started school back up with JJ. It was slow going and he needed much more time than usual to process the information. He really likes his history and geography class since the subject right now is cartography. Much to my surprise his handwriting of the cursive letters he learned in these couple lessons was beautiful.

He had none of those choking episodes yesterday, thankfully! So far I can say the same today too!

Thank you and I did get really great news today so I'll hopefully be able to share in a couple weeks. Hope you also get some answers on Monday.

I'm excited that you got some good news! Fingers and toes crossed, knocking on wood, and praying you will be able to share.

Michelle, I am so sorry to hear about all that has been going on!!! It seems like you have had quite the June!

That gal shouldn't work with kids...how mean to say what she said.

And the bullying! I agree with Tammie... some children need a swift kick in the rear. Tammie mentioned going straight to the parents.... or how bout the kids? I know it isn't a popular notion in todays world... but remember when we were all kids? I know I kept myself in check in part because there were adults everywhere and I knew if I stepped out of line someone would let me know. I took this approach years ago when a girl decided to behave wickedly to my dd. I pulled her out of religious ed classes (yes, this bullying was going on during religious ed) I gave her a good talking to... and not in the "can't we just play nice" sort of way but more in the "does it make you feel good about yourself, cause guess what..." sort of way. I know...maybe not the nicest... but she and her little group NEVER bothered my dd again.

JJ... I appreciated you sharing your story. I had never heard it before. Funny how things can change in an instant like that. I mean... you always hear that it can... but then it happens to you. Your world view is going one way and all of a sudden something hits and your course is forever changed. I do hope and pray that you not only find some answers in this next round of tests, but that he feels better soon. I am sure that all of these episodes are taking their tole on not only him... but you and your entire family.

I did take care of the bullying. I told the stage moms back stage each night about his seizures and I volunteered back stage some of the performances too. They kept a really good eye on him. I made him go to the bathroom right before each production and told him not to go in between, because it was just nerves if he had to go. That kept him out of the mens dressing room and in the green room with everyone else. Some of the actors are volunteers in his special needs troupe and I gave them the heads-up about the closet and they kept an eye on him too.

Not sure what happened with the costume and the disappearing. I ended up taking his costume home after the weekend so I'd know where it was for Tuesday's performances.

Appreciate your prayers. And yes, life as you know it can change in an instance. It seems since it happened we are constantly adjusting to new normals.

 

[annmarieda]

And yes, life as you know it can change in an instance. It seems since it happened we are constantly adjusting to new normals.

We are too... I have learned that I have to be far more flexible and adjust to change. I love how you put it... "constantly adjusting to new normals". That sums it up!!!

 

[lovethattink]

We are too... I have learned that I have to be far more flexible and adjust to change. I love how you put it... "constantly adjusting to new normals". That sums it up!!!

I know you understand. You are doing the same thing, adjusting to the new normals with Zoe.

At first it was very stressful and frustrating and it seemed as soon as we accepted one situation, something else would happen. Now we're in the mindset that we'll do what we can about the situation. What we can't do about it we place in God's hands. Our faith and a great support system get us through.

I just wish that all of our close friends and family were onboard with us. I had a close relative yesterday who is concerned about JJ's weight ask if we'd consider stopping all his medication since he is gaining weight from being on it. I said that's highly unlikely since it's those meds that are keeping him alive. This relative thought I was exaggerating so I asked how would we keep those neurons from sending signals to the rest of the brain if we stop the medicine that does just that?

We talked to the neurologist in May about his weight gain. He said not to worry about it. He's found that in his male patients the weight seems to work itself out once puberty sets in and testosterone kicks in.

 

[lovethattink]

I guess I should have knocked on wood. As Murphy's Law would have it, the car Grumpy drives to work won't start. He has to work later today, but he was planning on going to church this morning. When he got out to the car, it wouldn't start.

It's amazing though, how calm we all are about this. It's a car, not a person. They are doing what they can. I would have called AAA to have it towed to a garage, but the guys have to tinker first to see if there's anything they can do to help.

 

[annmarieda]

I know you understand. You are doing the same thing, adjusting to the new normals with Zoe.

At first it was very stressful and frustrating and it seemed as soon as we accepted one situation, something else would happen. Now we're in the mindset that we'll do what we can about the situation. What we can't do about it we place in God's hands. Our faith and a great support system get us through.

I just wish that all of our close friends and family were onboard with us. I had a close relative yesterday who is concerned about JJ's weight ask if we'd consider stopping all his medication since he is gaining weight from being on it. I said that's highly unlikely since it's those meds that are keeping him alive. This relative thought I was exaggerating so I asked how would we keep those neurons from sending signals to the rest of the brain if we stop the medicine that does just that?

We talked to the neurologist in May about his weight gain. He said not to worry about it. He's found that in his male patients the weight seems to work itself out once puberty sets in and testosterone kicks in.

People don't always understand. I try not to make bold comments in areas that I have no understanding... but not everyone exercises this same amount of caution. I too have had the odd comments... the ones that make you just go.. "yeah, that would work... I can't imagine how we and all of her care team NEVER considered something so simple" I guess they mean well enough though...

As for weight... listen to the doc!!!! My oldest son had weight issues set in right about JJ's age. He actually got quite large. Of course we got criticized at parents... and we worried. Repeatedly we asked our doc. She was certain he would grow and all that weight would "stretch". Sure enough... the boy shot up during puberty... and while he is no string bean by any means... the extra pounds just became... not extra.

 

[Alysa]

I know you understand. You are doing the same thing, adjusting to the new normals with Zoe.

At first it was very stressful and frustrating and it seemed as soon as we accepted one situation, something else would happen. Now we're in the mindset that we'll do what we can about the situation. What we can't do about it we place in God's hands. Our faith and a great support system get us through.

I just wish that all of our close friends and family were onboard with us. I had a close relative yesterday who is concerned about JJ's weight ask if we'd consider stopping all his medication since he is gaining weight from being on it. I said that's highly unlikely since it's those meds that are keeping him alive. This relative thought I was exaggerating so I asked how would we keep those neurons from sending signals to the rest of the brain if we stop the medicine that does just that?

We talked to the neurologist in May about his weight gain. He said not to worry about it. He's found that in his male patients the weight seems to work itself out once puberty sets in and testosterone kicks in.

Poor you. It's never easy when others pick on our parenting skills. I would have flown at her. Good for you for keeping under control.

I guess I should have knocked on wood. As Murphy's Law would have it, the car Grumpy drives to work won't start. He has to work later today, but he was planning on going to church this morning. When he got out to the car, it wouldn't start.

It's amazing though, how calm we all are about this. It's a car, not a person. They are doing what they can. I would have called AAA to have it towed to a garage, but the guys have to tinker first to see if there's anything they can do to help.

Hope the car is better soon! You have the best attitude I've ever seen!

 

[lovethattink]

Yesterday was a rather mixed emotions kind of day. We went to the epileptologist's office for JJ's results, then to the Orlando Science Center, Bubba Gump's for lunch, then off to the "other" dark side...Universal Studios.

We got mixed news at the office. What is causing his choking is neither seizure nor reflux. It's being caused by tics (like seen in Tourette's Sydrome) in his throat. It's a relief that it's not seizures, but also brings about a concern about the tics. A treatment plan was put into action. Hopefully we'll see some results and the choking will stop.

The Orlando Science Center was so nice early in the morning. Very few people there.

We had trouble getting into Universal. My pass is the only one that covers parking. Something happened with the Easy Pay. It was an error on their end, so that was fixed via an almost 30 minute phone call and we turned back around and tried again. Getting in this time.

Bubba Gumps was a good time too. The restaurant was very empty when we got there. It rained while we were there which brought in more people.

We hadn't planned on going to Universal, but JJ wanted to go on Minion Mayhem. We had to "renew" his Attraction Assistance Pass and pick up a Rider's Guide. The new Transformer's attraction is out of the question. It's not part of the guide yet, but there was an insert for it.

Once again, I was very impressed with the cm at Universal. EVERYONE we encountered was helpful, courteous, and respectful.

Our first stop was Minion Mayhem. It was a 75 minute wait. Apparently, I went to the wrong person to get the time written on his pass. But I was told in such a nice and respectful manner what I needed to do and which person we needed to go to. Found her and she took his AAP and apologized perfusely for the wait and having to write down a return time. It's peak season, we expected that. She had no reason to apologize. But it was very considerate of her just the same. She suggested we take him to Shrek.

Shrek was a 15 minute wait. But until we waited in line, saw the preshow, and then the show, it was about 45 minutes and time for our return to Minion Mayhem. They changed the queue for Minion Mayhem since last summer. Instead of lining down the street, both queues went into the same area. This was a nice improvement. I think they even had cooler air pumped in there. Because you could really feel a difference where the queues separated to go into the building. Not many people must ask for stationary seats. We were the only 3 people sitting on the benches. This attraction is such a cute one. Now we are ready for the release of the sequel!

We headed out of the park after these two attractions. There are only a couple other things he can do at Universal. But he was tired and the sun was starting to come out again, heating it back up. We had a fun day and the best part of it was no choking or seizures. It was nice an relaxing as we took our time.

People don't always understand. I try not to make bold comments in areas that I have no understanding... but not everyone exercises this same amount of caution. I too have had the odd comments... the ones that make you just go.. "yeah, that would work... I can't imagine how we and all of her care team NEVER considered something so simple" I guess they mean well enough though...

I'm sure they mean well too.

As for weight... listen to the doc!!!! My oldest son had weight issues set in right about JJ's age. He actually got quite large. Of course we got criticized at parents... and we worried. Repeatedly we asked our doc. She was certain he would grow and all that weight would "stretch". Sure enough... the boy shot up during puberty... and while he is no string bean by any means... the extra pounds just became... not extra.

Thanks for sharing about your son's weight.

Poor you. It's never easy when others pick on our parenting skills. I would have flown at her. Good for you for keeping under control.


Hope the car is better soon! You have the best attitude I've ever seen!

The car is an interesting story. DH determined the oil to be fine, the battery to be charged. During JJ's play, I won a gift basket from Good Year Tires. I am far from mechanically minded, so I can't tell you all that was in there. But one of the bottles of something, my dh put in the car and it started up just fine after that!!! It was just what we needed at just the right time! How's that?!

 

[momabaarjo]

I would not worry about the weight either...Boo put on quite a bit from 2nd grade to 6th grade...this year he has grown taller and is starting to slim out. He will never be bean pole thin but he looks nice and solid. I am seeing Goo start putting on weight this spring...trying not to worry about it either. This summer though there is no junk food in the house, just lots of fruit and veggies if they want to snack.

Glad you got a few answers on JJ.

Love the dark side...my boys are dreaming of Transformers!

 

[lovethattink]

I would not worry about the weight either...Boo put on quite a bit from 2nd grade to 6th grade...this year he has grown taller and is starting to slim out. He will never be bean pole thin but he looks nice and solid. I am seeing Goo start putting on weight this spring...trying not to worry about it either. This summer though there is no junk food in the house, just lots of fruit and veggies if they want to snack.

Glad you got a few answers on JJ.

Love the dark side...my boys are dreaming of Transformers!

Yes, Boo looks nice and solid. Goo is so cute.

We don't keep junk food in the house either. Sweets are fruit. He has water, milk, orange juice or apple juice available for drinks. Usually he sips on his water. The only empty calories he gets in a day is his scoop of vanilla icecream each day. When we go out to eat, it's a different story. For example, he had chicken fingers at Bubba Gumps (at home it would have been either baked or grilled chicken), fries (he doesn't eat fried foods at home), and milk. Broccoli is the only vegetable JJ will eat and it has to be raw.

I'm sure the boys will love transformers. When will they be back to FL? You are solo for the run, right?

 

[mickeystoontown]

I know that there was some relief in knowing that the choking spells were not actual seizures. It's good that the doctor went ahead and started a treatment plan. Praying that it works for that sweet boy of your's!

It sounds like ya'll had a good time at your somewhat spur-of-the-moment stop at Universal. From everything that you have said, the castmembers there really went out of their way to be helpful. That's good to hear since I've heard other reports of the Universal CMs not being as nice as those at Disney.

 

[lovethattink]

It sounds like ya'll had a good time at your somewhat spur-of-the-moment stop at Universal. From everything that you have said, the castmembers there really went out of their way to be helpful. That's good to hear since I've heard other reports of the Universal CMs not being as nice as those at Disney.

We've only gone to Universal a handful of times, despite having annual passes. But each time we were surprised at how the cleanliness of the restrooms and the friendliness of the cast members in general were better than Disney's. Well, except for SWW. The event staff and character cm's far exceeded our expectations of past SWW.