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

[pwdebbie]

I can't imagine your heartbreak as you watch JJ go through all this stuff. How I wish we could snap our fingers and make everything better. I'm praying for JJ and for you.

 

[lovethattink]

I can't imagine your heartbreak as you watch JJ go through all this stuff. How I wish we could snap our fingers and make everything better. I'm praying for JJ and for you.

Thanks, Debbie. I'm waiting for a call back from the neurologist office. That last one really concerned me. I appreciate the prayer. I don't know how I'd make it through without my faith.

 

[kaoden39]

I am praying that it all gets better for JJ. You all are in my thoughts and prayers.

 

[lovethattink]

I am praying that it all gets better for JJ. You all are in my thoughts and prayers.

Thanks, Michele. Appreciate it.

Got the call back. Stopping the OCD med because chances are the tics are an adverse drug reaction. And increasing the tic med. Hoping it's that simple, and that his OCD doesn't get out of hand between now and whatever they give as replacement on Monday.

 

[blessedmom4]

Michelle, I am so sorry that things aren't working out well for JJ and your summer has been so difficult. I AM happy you had your days at the hotel and that you were able to get a way, even for a bit.

I hope the meds start to work CORRECTLY and stop with the added SE, so frustrating and i know how those weekend neuro calls feel.

JJ needs his therapies to start and anxiety to reduce. I am sure you are doing all you can to stay calm when it happens, that is the best thing for JJ, calm, soothing and quiet.... for all of you!!!

 

[ladylyons]

Continued prayers for JJ! I can only imagine what your having to go through.

 

[Restrasz]

Praying for your whole family and especially for your precious little boy! I hope he has a better Sunday? Love...

 

[kaoden39]

Thanks, Michele. Appreciate it.

Got the call back. Stopping the OCD med because chances are the tics are an adverse drug reaction. And increasing the tic med. Hoping it's that simple, and that his OCD doesn't get out of hand between now and whatever they give as replacement on Monday.

I hope that it works. Poor thing.

 

[reelmom]

I am praying for JJ. What a horrible thing for your family to go through.

 

[lovethattink]

Compared to the two nights before, last night was better for JJ. The last three nights, dh and I have gone to bed wearing clothing so we are ready if we had to take him to the hospital. Last night was the first night we didn't contemplate whether or not to take him. There was a definite improvement.

He only had one really bad tick that involved his entire body. He felt it coming on and didn't want his daddy to see it, so he walked across the house to me. He made it just in time before the tic took over his legs. Thankfully he was already sitting on the floor when it started.

When it was over, I explained to him how dangerous it was for him to walk across the house. He walked across the ceramic tile and the hard wood floor to get to me. (He was in the same room as his daddy when he felt it coming on.) Had his legs given out before he made it to me he could have really been hurt. He said he held it in until he got to me. I made him promise he won't walk across the house any more when he feels one coming on.

His sleep was peaceful last night. And we all got the rest we needed.

Yesterday was our 22 wedding anniversary. We didn't celebrate it. Hopefully tonight we can get some carry out from a restaurant. And have a little celebration here at home.

I'm working on a SWW update. It's been too long since the next one. It's coming; another celebrity M&G and a repeat of pixie dust.

Michelle, I am so sorry that things aren't working out well for JJ and your summer has been so difficult. I AM happy you had your days at the hotel and that you were able to get a way, even for a bit.

I hope the meds start to work CORRECTLY and stop with the added SE, so frustrating and i know how those weekend neuro calls feel.

JJ needs his therapies to start and anxiety to reduce. I am sure you are doing all you can to stay calm when it happens, that is the best thing for JJ, calm, soothing and quiet.... for all of you!!!

I've tried several times last evening to respond, but it seemed either my computer didn't want to cooperate, or JJ needed me. This summer certainly hasn't turned out as planned. I'm glad he had some good days and we were able to take advantage of it.

We are trying to make the best of summer. The last 3 days JJ has been at his worse, so we haven't been able to go anywhere. It broke my heart the other day when he picked up a notebook and started writing in it. Unfortunately, I couldn't read what he wrote. After his ticking was over and he could communicate verbally, I asked him what he wrote. He explained it said, "Help me". Broke my heart. I told the NP about the note when I talked to her on Friday afternoon.

I sure hope we get the right mix of meds for him soon. He needs a break from this. We all do.

I hope we get a call soon that they can take him sooner for his therapies.

Continued prayers for JJ! I can only imagine what your having to go through.

Thanks appreciate the prayers. I know they are all helping.

Praying for your whole family and especially for your precious little boy! I hope he has a better Sunday? Love...

Thanks so much for the prayers. I appreciate each and every one. I hope so too. He definitely had a better night of sleep. We all did.

I hope that it works. Poor thing.

I hope so too. He's been a real trooper through this all. But he's ready for it to stop, or at least lessen.

I am praying for JJ. What a horrible thing for your family to go through.

Thank you so much for the prayer. The NP and the neurologist both stressed how important it is not to make a big deal out of it. So while I'm freaking out on the inside, I'm staying very calm on the outside. Telling him it's just a tic and it will pass soon.

Yesterday afternoon after a nasty one he told me that he sings a song in his head while it's happening. So he thinks about the words and the melody instead of the tic. I asked him to sing me what he sings. It turns out it's the words I "sing song" to him when he has his seizures during the night.

 

[sl_underwood]

I haven't been around much but just stopped by to let you know I'm thinking of you guys.

 

[lovethattink]

I haven't been around much but just stopped by to let you know I'm thinking of you guys.

Thanks, Lora. Been thinking of you, Steve and Luke.

 

[kaoden39]

I am hoping you all are having a peaceful Sunday!

 

[Millie12591]

I'm a bad friend, I should have gotten over here sooner. Sooooorry.

Need to catch up now!!

 

[ladylyons]

I hope today was a good day. We're here whenever your ready to do the next update. The most important part is to be there for JJ when he needs you.

 

[WDWRids]

So sorry to hear JJ has had more aggressive tics! I cant even imagine how you must feel. Please take care of yourself. Praying last night went smoother and all of you were able to get some rest. Happy late Anniversary! Positive thoughts for a good day today

 

[lovethattink]

Another call into the neuro's office this morning. JJ goes back next week. He is doing a little better since we stopped that med, but it will take a while to totally get out of his blood stream. Today he went for blood work to see if there is strep in his system. Strep can cause tics.

I got a paragraph written so far on the update. Haven't had a chance to work on it.

Our big plans for the rest of the day is to find a GNC and take a look at their calcium supplements. This is Monday our Disney day, JJ has been begging to go to the MK, but we just aren't sure how that would go. A crowded park or monorail might not be the best place for one of those tics that affects his whole body. He's going stir crazy the last few days being at home.

I am hoping you all are having a peaceful Sunday!

Thanks for the peaceful thoughts. Yesterday was a little better.

I'm a bad friend, I should have gotten over here sooner. Sooooorry.

Need to catch up now!!

Hi, Camille! No worries. I'm going slow as Molasses over here this TR.

I hope today was a good day. We're here whenever your ready to do the next update. The most important part is to be there for JJ when he needs you.

Yesterday was better than the last few days. Today is going even better. He's had only two episodes today. Before they took his blood he hyperventilated and had those choking tics. I felt so badly for the others in the waiting room because they wouldn't allow anyone else back there until he stopped. He really backed things up for them. After we got home and he began to relax, he had one that affected his whole body. Thankfully today is dh's day off, so he lifted him off the ceramic tile to the carpeting and onto the couch.

So sorry to hear JJ has had more aggressive tics! I cant even imagine how you must feel. Please take care of yourself. Praying last night went smoother and all of you were able to get some rest. Happy late Anniversary! Positive thoughts for a good day today

I'm doing fine. I always get through the tough times with no problems. It's after everything is all calmed down that it hits me.

Thanks for the anniversary wishes. We still didn't celebrate.

Today is the best day in a while. Hopefully they will continue to get better and better.

 

[ladylyons]

Yesterday was better than the last few days. Today is going even better. He's had only two episodes today. Before they took his blood he hyperventilated and had those choking tics. I felt so badly for the others in the waiting room because they wouldn't allow anyone else back there until he stopped. He really backed things up for them. After we got home and he began to relax, he had one that affected his whole body. Thankfully today is dh's day off, so he lifted him off the ceramic tile to the carpeting and onto the couch.

Glad that things are getting better. Hopefully they continue. I'll keep you guys in our prayers. Don't feel bad. They were keeping JJ safe and that's the important thing. Our lab is always backed up so I wouldn't have even thought twice about it. Glad your DH is off today so he was there to help with moving JJ.

 

[lovethattink]

Glad that things are getting better. Hopefully they continue. I'll keep you guys in our prayers. Don't feel bad. They were keeping JJ safe and that's the important thing. Our lab is always backed up so I wouldn't have even thought twice about it. Glad your DH is off today so he was there to help with moving JJ.

Yesterday afternoon was pretty decent. Appreciate the prayers and good thoughts.

 

[lsenquiz]

We have never eaten at Sunshine seasons but my try it for our upcoming trip.

We love Journey into Imagination and Gabriel always spends a ton of time playing everything when we exit the ride.

We plan to do Wilderness Explores on our upcoming trip so I am glad JJ enjoyed it. Your description sounds like it is right up Gabriel's alley.

I hate that JJ was not able to stay longer. I know I have trouble on really humid days so can not image how much of a struggle it is for him.

Poor JJ and the tics. I hope the changes you have implemented have the desired effect long term. It is misreable to feel like you have no control over your own body!