childhood disintegrative disorder Archives - Page 260 of 276

An important update

I want to do a general update, and this time focus on Lizze. It's been awhile since I've really talked much about how Lizze is doing, so I thought I should correct that. As you may or may not remember, Lizze was taking a series of three, very intensive, outpatient therapy-type classes. These are designed for people with PTSD, Bipolar Disorder, and Borderline Personality Disorder. Lizze has both Biolpolar and PTSD. These classes have been enormously beneficial for her. Unfortunately, after all three classes were approved, and she was halfway through the second one, insurance decided to no longer cover this therapy. They didn't provide a reason other than it wasn't beneficial. The staff at the Cleveland Clinic/Akron General fought to get this overturned but were met with the impervious…

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July 30, 2017

He just breaks down in tears

Emmett is very unpleasant today. He's freaking out over every single thing that doesn't go right. Any tiny imperfection is leading to a massive meltdown. He's still running a low grade fever, and is about waist deep inside of a fever flare. Emmett is a difficult kid on a good day, but he's never like this unless he's in a fever flare. He's even more overly sensitive to all sensory input than he normally is and it's making things very unpleasant for him. If we try to calm him down and comfort him, he just breaks down in tears. Honestly, I'm really, really frustrated right now, because I'm so tired of being screamed at. I also understand that Emmett is absolutely miserable, and not enjoying things at all. I know…

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July 30, 2017

My thoughts

Sorry for my absence

I'm sorry that I didn't write much yesterday. Lizze and I had a rough day, both physically and emotionally. We're still fighting a massive emotional hangover from an already long weekend. Lizze and I took turns sleeping yesterday, because we were so exhausted. I'm hoping that today will bring with it, some peace. The boys are doing okay, but it looks like Elliott may be getting sick because he was running a fever before he went to bed. Emmett of course, is still dealing with a fever flare and miserable as ever. I'm gonna be honest, my goal for today is to simply survive.

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July 30, 2017

Emotional Hangover / My thoughts

The emotional hangover

The boys will be home soon. Apparently, Emmett lost a tooth last night, and then lost the tooth he lost. Does that make sense? Anyway, we have about an hour before they arrive. Even after a good night's sleep, I'm still exhausted. Yesterday was a very emotional day, and frankly, thays level of emotion is exhausting. I'm so glad we decided not to take the boys with us because they would likely be a mess today. Lizze and I refer to this level of exhaustion after an emotional event as being emotionally hung over.

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July 29, 2017

Gavin / My thoughts

Don’t tread on his routine

Shortly after we arrived home last night from calling hours, we realized that we had missed Lizze's Mom trying to get ahold of us. Our phone were still on silent from the service, It was about 10 pm when we connected and there was an issue with Gavin. In all the chaos yesterday morning, we forgot to put his meds in his overnight bag. On a scale of one to ten, this is maybe a four or five. One night isn't going to be a huge deal, although this almost never happens unless there's an issue with a refill. Gavin was apparently upset because he was unable to sleep without his meds. The reality is, he's unable to sleep because his routine was disrupted. Poor Gavin gets himself all worked…

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July 29, 2017

My thoughts

Thank you

I want to take a minute and say thank you to everyone, for all the kind words. It was a rough day but we made it through. Something I really appreciate about the human race is our capacity to show compassion when another human has passed away. We don't even need to know the person that passed, to understand the loss. Lizze and I are exhausted. I'm ready to crash and sleep until the boys get home later this morning, Anyway, thank you all once again. I appreciate each and every one of you. ☺

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July 29, 2017

Fragile Health / Gavin / My thoughts

Parents aren’t supposed to bury their kids

I don't do well with funerals, not that anyone really does. I absolutely avoid going to them because I've seen so much death in my life already. I can't even tell you how much death I witnessed as a paramedic. Eventually, it gets to you and changes you at your core, at least that's how it worked for me. Thinking about everything the last day or so, I realized one of the biggest reasons I don't deal funerals very well. In all likelihood, I will one day attend Gavin's. With all he's dealing with healthwise, his prognosis isn't good. Every time I see a funeral, it feels like a kick in the gut, and reminds me how fragile life is, especially Gavin's. Maybe that sounds strange to some of you,…

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July 28, 2017

My thoughts

I know he’s miserable, but damn

Things aren't going so well this morning. I'm already not in the best place and it feels like nothing is going right. Emmett is very clearly not feeling well, and is kinda taking it out on everyone. Emmett's demeanor has everyone on edge, including myself. It's not his fault, and I know he's miserable, but damn..

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July 28, 2017