Common Variable Immunodeficiency Archives - Page 106 of 260

We could all use the break

We're finally getting back into our routine after last week and the long weekend. It's been fun for the boys but it's also been chaos for them because they thrive in their routine, as do most Autistic people. The rest of the week is going to be a sorta slow. We have all of our normal weekly appointments plus one out of town trip for Gavin. He needs to get to Akron Children's Hospital to see his gastro. It's mostly a follow-up but we would be getting him in anyway because he's having some digestive related issues. Outside of that, it's going be a bit less chaotic than last week and that's a good thing. My focus for this week is getting Friday's podcast episode done, walking and continuing my…

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February 19, 2019

My thoughts

Things are not going so well right now

I'm having a rough go at this weekend. It's the tail end of a long-ass week and I'm spent. The E's are doing pretty good right now and Emmett even finished his planet report which he's been incredibly stressed out over. Elliott has been relatively mellow and that's pretty awesome for him. On the other hand, Lizze and I have been struggling with Mr. Gavin today. We've been struggling with him for the entire weekend to be completely honest. Gavin has been on an endless, nonstop mission to narrate every single aspect of his life, at least that's how it feels. That's a nice way of saying, he will not stop talking. He just keeps going and going and going. As far as talking goes, he's like the goddamn Energizer…

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February 18, 2019

Inspirational Posts / My thoughts

Why it’s okay to feel frustrated with your #Autistic or #SpecialNeeds child

One of the things that are difficult in my life as a special needs Dad is coming to terms with my own humanity. What I mean by that is accepting my limitations as a parent, embracing my emotions and not beating myself up for getting frustrated with my kids. There are a plethora of reasons that being human makes Autism and Special Needs parenting more difficult. For the purposes of this post, I want to talk briefly about frustration. There's this unspoken belief that simply because a child is Autistic, has Special Needs or maybe even fragile health, that as a parent, we aren't ever allowed to be frustrated with them. I don't know who started this or why it's such a popular belief but this needs to change because…

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February 16, 2019

My thoughts

Quick update

Gavin is having an off day. As I type that, I'm asking my how I even know he's having an off day because most of his days are kinda bizarre. I don't know if that makes sense. Anyway, he just seems off today. I'm not super worried about it but I will be keeping an eye on him. It's 1 PM and I've only seen him once today. He's running missions today and we just may not see him very much. That's sort of the nature when it comes to how his life is impacted by Schizophrenia. I'm still recovering from the long week but I fully intend to go walking in a little bit. It's important that I keep making progress because I need to continue raising my good…

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February 16, 2019

My thoughts

This week has taken its toll

It's been a very long week and I'm spent. The good news is that Lizze's pain has been cut in half, which is an enormous weight off her shoulders. It's far from perfect because the amount of pain she's still in would likely incapacitate most people, but it's significant progress. This is a big relief for us as a family and we're incredibly grateful. I'm just burnt out right now. Traffic was unbelievable this week. It took twice as long to get back and forth. Sometimes it took even more than that. There were days where it took hours longer than it normally would. It took us two and a half hours to get home yesterday because of a very serious car wreck that had traffic backed up forever. I…

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February 15, 2019

Cleveland Clinic / Headache Infusions / My thoughts / Neurological Center for Pain

Why we almost didn’t make it to the @ClevelandClinic today

I'm absolutely exhausted but I wanted to deliver a super quick and dirty update. Lizze had her 3rd headache infusion at the Cleveland Clinic today. We almost didn't make it because traffic was absolutely insane. When I say insane I mean insane. It was literally bumper to bumper traffic for 68 fucking miles. It took 2.5 hours to make a 1-hour drive. We were quite late but we called ahead to let them know what was going on and they told us not to worry. Once we arrived, they took her back and got her hooked up. There were zero issues beyond us being late and she walked out of the hospital today with her migraine at a 6.5 out of 10. In the last 7 or 8 years, her…

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February 14, 2019

Cleveland Clinic / Headache Infusions / My thoughts / Neurological Center for Pain

We’re leaving for Lizze’s 4th and final headache infusion this morning

We're preparing to make the trip back to the Cleveland Clinic's Neurological Center for Pain once again today. This time it will be for Lizze's final headache infusion. There's a really good chance that she will walk out today with her pain having been cut in half for the first time in 7 or 8 years. We're very excited because she feels really good. As the pain lessens, she's coming back out of her shell and it's amazing. We're so grateful that this is working and frankly, that we even have this last infusion today. There were some issues that almost cost her this last one but they are all worked out and we feel very lucky. There are no plans for Valentine's day but we're okay with that. ☺…

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February 14, 2019

My thoughts / Podcast

What You Need To Know About #Meltdowns

This week's episode is all about Sensory Processing Disorder and meltdowns. These are extremely important topics that cause a great deal of confusion. Sensory Processing Disorder (SPD) and Meltdowns are two of the most commonly misunderstood things that an Autistic person can experience. Even more confusing is how to know the difference between a meltdown and a tantrum. Those words are used interchangeably and that’s a major problem, leading to a great deal of misinformation. This week's episode of The Autism Dad podcast will help to explain how these things can impact people and how to tell the difference between a meltdown and a tantrum. You’ll also hear from Emmett, my youngest, as he talks about how SPD impacts his life on a daily basis. I decided to publish this…

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February 13, 2019