Gavin Archives - Page 40 of 113

Gavin’s is struggling and it’s heartbreaking

Gavin's having a rough morning. He really struggled to setup his IVIG infusion today. At one point, he ran into what he perceived to be a problem and couldn't work through it. Part of prepping his IVIG infusion, requires him to draw up solution into a giant syringe. It's important to remove any air bubbles from the solution because it will interfere with the infusion process. Normally, he pushes the bubbles out before he removed the needle from the syringe but today he removed the needle first. He got upset with himself and was going to just leave the bubbles there because he'd already disposed of the needle. I told him he can't leave the bubbles, so he proceeded to open a second needle and I had to stop him…

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April 27, 2018

Autism Parenting Confessions / Gavin / Inspirational Posts / My thoughts

I’m a Special Needs Dad, guilty of losing hope

I haven't written a truly heartfelt piece in a very long time. Writing has been such an intrical part of my life for so long now but I feel like I've lost my voice. Writing has lost its meaning and I've lost my passion for it. I'm working to rebuild that part of my life and it's not easy. There are roadblocks I've yet to overcome and others that cause me to veer off course, at least temporarily. That being said, and reasons I can't explain, I feel compelled to talk about hope. I'm not writing about it in a way that's meant to be inspiring to others, at least I don't think it is. I'm writing about how I've lost hope. I'm writing about something very personal and painful…

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April 26, 2018

Autism Parenting Insight / Gavin / My thoughts

An “OMG…. Are you serious?” #Autism Parenting Moment

I've been very open and honest about how Gavin drives me crazy with his constant talking or repetitive questions. I share that not to make Gavin look bad but to provide insight into just some of the challenges I face as a special needs parent. Maybe some of you can relate and find comfort in not being alone. Anyway, it occurred to me this morning, while taking Gavin for his weekly bloodwork, that I should share another thing he does. It's funny but at the same time, it can also be extremely frustrating as well. I've been working with Gavin every day in regards to remembering that he doesn't need to tell me everything he's thinking. There are many times that Gavin will walk into the room, with a big…

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April 25, 2018

Gavin / My thoughts

Why he’s so excited about this red box

It's a little odd but Gavin has been chomping at the bit to get a new sharps container for the disposal of his IVIG infusion supplies. I say it's odd because he's been really focused on it. On Friday, I made arrangements for a new sharps container to be delivered today and the old one picked up. It's not that I was putting this off, it's that the current container simply wasn't full. Gavin perceives it as an eminent issue because it was approaching the full mark, even though there was a good ways to go still. I informed him over the weekend that his new one will be delivered sometime on Monday but I didn't have a specific time frame. That has clearly been causing him a bit of…

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April 23, 2018

Autism Parenting Confessions / Gavin / Inspirational Posts / My thoughts

Does this make me the monster I feel like I am?

I'm going to cut to the chase. Putting things bluntly, Gavin is driving me absolutely crazy and I'm not as patient with him as I should be or as much as he deserves. He's constantly asking me the same questions and sharing outload, every thought that pops into his head. It's exhausting, frustrating and overwhelming. I used to be so patient with him in this regard and would listen to every word that came out of his mouth. Over time, it's chipped away at me and as Gavin's overall cognitive ability suffers, the constant talking increases. Getting him to do one or two step tasks requires multiple attempts and a great deal of coaching. I've no question in my mind that he's doing the best he can. I also know…

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April 23, 2018

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

There is no cure for what my oldest son has but we keep pushing forward

Eariler today there was a knock at the door. It was Akron Children's Hospital delivering Gavin's IVIG infusion supplies. I guess I didn't realize it was already that time of month again. Gavin has been getting these delivers for more years that I care to remember and as much as I hate the fact that they're necessary, they are. These supplies allow for his twice a weeky IVIG infusions. Without these infusions, Gavin wouldn't have a functional immune system. It's a heartbreaking reality that people like Gavin and families like ours have to live with. There's no cure for Common Variable Immunodeficiency and while the treatment is available, it's also incredibly expensive. Over time, it's likely that Gavin's condition will continue to worsen and he will need higher and higher…

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April 20, 2018

Gavin / My thoughts

At least the pain doesn’t last long

Gavin's having a pretty decent day thus far. After taking the kids to school, I took him to get his weekly bloodwork done. Once again, he did great in that regard and now we wait for the results. Unfortunately, while he was walking out of the lab, both his hips popped and he was in a lot of pain. Gavin's joints are known to quite frequently pop out of place. That's not much we can do about that because it's a genetic thing. He did physical therapy for a long time and perhaps we need to revisit that again. He's doing fine now and the pain only lasts a short while. It sucks that it's present at all but at least it doesn't last long.

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April 18, 2018

Autism Parenting Insight / Gavin / My thoughts

I mention Gavin was struggling today and here’s what I’m seeing

This post was meant for yesterday but didn't get published until now. The morning didn't go as originally planned and perhaps that threw Gavin off a bit. He was definitely off this morning and it presented some frustrating situations for me. For starters, he was freaking out over his IVIG infusion. Gavin was worried about the needles leaking before he even began the procedure. This isn't uncommon for him to worry about, and I can't blame him for worrying, but the degree to which he was worried, interfered with getting his infusion going this morning. Gavin was doing some serious pacing and when he'd stop, he would lean side to side, sorta rocking back and forth. He was seriously stressed. It's sometimes hard to out my finger on what exactly…

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April 17, 2018