Ehlers Danlos Archives - Page 52 of 101

After tonight’s events, we have 3 major concerns

With everyone being sick and by everyone I mean Elliott and Emmett, it was just Gavin at therapy tonight. I'm at a loss as to how to describe what took place while we were there. That sounds ominous, and it's not really anything like that. Gavin had been anxiously awaiting the appointment because he wanted to update both Dr. Pattie and myself on the day's adventures. What ended up happening was Gavin spent an hour, rambling on about the recent code z stuff I was talking about this morning, along with a ton of other things. The themes of these missions were all good vs. evil. I'm a little concerned about the violent nature of some of his actions on these missions. I'm actually quite a bit concerned by some…

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April 17, 2019

My thoughts

This week is rapidly going downhill

So Emmett and Elliott are both home sick today. Emmett was up most of the night complaining of his back hurting, a headache, and his face hurting as well. I thought that was kinda weird. He's getting worse as the day wears on and he's also running a fever now. Mr. Elliott is moving around a bit more, but he's got an awful cough and is still running a fever as well. He's spent most of the day laying in bed, which tells me he's definitely not feeling well. We're keeping an eye on both of them and trying to keep them both hydrated, which is proving to be a challenge, especially for Emmett. I spoke with the school today, and there's a bunch of crap going around, we are…

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April 17, 2019

Autism Parenting Struggles / Clozapine / Gavin / My thoughts / Schizophrenia

Code Z

Another day, another psychotic episode. Last night, Gavin came running into the living room and was visibly upset. He began nervously pacing back and forth before blurting out code z. I wasn't paying close attention to what he was saying because he's psychotic and saying all kinds of crazy things. I don't mean that disrespectfully but instead it's literally what's happening in my house right now. After he began shouting code z - code z, I was concerned about his little brothers hearing him, so I calmed Gavin down and asked him to explain to me quietly what was going on. Even paying meticulous attention to his words left me struggling to follow what the hell he was talking about but here's what I gathered. Code Z stands for Code…

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April 17, 2019

Autism Parenting Insight / My thoughts

Even the smallest changes can be disruptive to my #Autistic kids

Mr. Elliott is home from school due to illness. He was actually sent home from school yesterday with a low-grade fever and cough. Since you have to be 24 hours without a fever before returning to school, he's currently resting in his room. Emmett was not happy about having to go to school alone, and Lizze did a fantastic job of helping him work through that. He's still not happy, but he made it to school and will hopefully have a good day. As with many kids on the Autism Spectrum, he doesn't like changes to his well-established routine. It doesn't really matter how big or small the change may be, he doesn't like it. Honestly, as a parent, it can be exhausting trying to keep up with everyone's routine…

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April 16, 2019

Confessions / Depression Management / Link / My thoughts

Update: How I’m managing my #Depression

As many of you know, I've been warring with Depression for most of my life. I talk about managing Depression as an ongoing war because there will be many battles, some I'll win and some I won't. Recently, I decided that I needed to get more help in managing my Depression because I was significantly struggling in many areas of my life. I was working very hard to manage my Depression, but it just wasn't enough. One of the things I had been trying to do was manage my Depression as naturally as I can, meaning I wanted to limit medication use, if possible. You may recall my nightmarish withdrawal from Paxil last year. I was sick for almost six months after taking three months to taper off slowly. It…

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April 16, 2019

Autism Parenting Insight / Elliott / Emmett John / My thoughts

Phone calls from the school during the school day are never good

Just when I thought things were finally settling down and we could catch our breath from all the Gavin drama this morning, Lizze gets a phone call. Elliott is in the school office with a fever and needs to come home. I had to drop what I was doing to retrieve him from the office and bring him home. Of course, I would drop everything to retrieve one of my kids, what parent wouldn't? Elliott isn't feeling well, but I'm glad that we were able to make him more comfortable. I'm currently waiting for Emmett to come out of the school and he's going to be a bit flustered because he doesn't like surprises. This will probably throw him off and make waves in his world for a little while.…

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April 15, 2019

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Gavin had a massive, massive meltdown this morning

Gavin slept in this morning which is weird in and of itself. He didn't wake up until just before I got home from my morning walk. As I walked in the door, Gavin was working on getting his IVIG infusion ready, and it wasn't going well. It's been about an hour, and I just got Gavin calmed down enough to try working with him on his infusion. Gavin was so angry that frankly, he wasn't safe to be around. Angry is probably the wrong word. He wasn't angry at anyone. I think he was so frustrated with the infusions continuing to leak; he was beyond what he could cope with. I'm glad the kids weren't home because they would have been terrified by his behavior. Gavin was screaming as loud…

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April 15, 2019

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Longer needles are needed

Gavin will be resuming his IVIG infusions this morning. He missed his infusion on Friday cause his supplies didn't arrive until late and then he ended up in the hospital. We opted to hold off until today because he was in bad shape and when he was getting back on his feet, we didn't want to put the extra stress on his body. Missing one infusion isn't a huge deal. It's not something we want to do for shits and giggles, but considering the circumstances, it was for the best. I have to call Akron Children's Hospital today because we need to order longer subcutaneous needles for his infusions. His doctor wants to try one size longer to help address the issue of his infusion leaking, requiring frequent resticks. Gavin's…

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April 15, 2019