Blog - Page 170 of 1611

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

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

My thoughts

The weekend sucked, but I’m feeling pretty good

After a long, physically and emotionally draining weekend, I'm feeling like we ended up being very lucky. Gavin's emergency was dire and very scary. It's impossible to explain what it felt like in those moments leading up to calling 911. Both Elliott and Emmett were affected by the experience. You can't see the things they saw and not be impacted by it. Elliott seems to be doing okay. Although truthfully, he internalizes everything and it may be a bit before we know how much he was impacted. Emmett was most visibly upset. He was distraught seeing Gavin in the condition he was in. He was afraid Gavin was going to die. Poor Emmett was curled up in the fetal position sobbing in the corner of his bed. It was so…

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April 15, 2019