IVIG Infusion Archives - Page 96 of 181

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

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 Struggles / Gavin / My thoughts

Every day it seems there’s more to worry about

It's been a chaotic day for me. Elliott was home sick, Lizze isn't feeling good, and Emmett is struggling in his own way. Don't even get me started on Gavin. Today brought to light a new concern in regards to Gavin. When we were at his neurologist a week or so ago, he weighed 137 lbs. That was progress in our efforts to help him gain weight. I noticed yesterday, when I was trying to help him with his infusion, he has almost no body fat. It's so difficult to do these infusions because the subcutaneous needles end up hitting muscle. Not only is that painful but I think it's also contributing to the issues with the infusion sites always leaking. This morning I had Gavin step on the scale,…

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April 17, 2019

Autism Parenting Advice / Inspirational Posts / My thoughts

A Gentle Reminder: Don’t forget to focus on you

Gavin's struggles continue to increase, as do my constant levels of stress and anxiety. While it's not Gavin's fault, the constants associated with managing his behaviors is quite taxing, and considering I'm only human, it's essential I manage this stress the best I can. The reality is, being an Autism parent is among the toughest jobs any person can do. It's very rewarding and absolutely worth it, but it's in a category of challenge that exists unto itself. It's critical that I make self-care an absolute priority in my life. If I don't, I'll run myself into the ground trying to be everything for everyone and end up not doing any good for anyone. I wanted to remind my readers that it's not a bad thing to be selfish from…

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April 16, 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