Common Variable Immunodeficiency Archives - Page 104 of 260

Why can’t Emmett catch a break?

It's been a long night. Mr. Emmett is not feeling good and he seems to be dealing with a really bad headache. This poor kid can't seem to catch a brick. We were finally able to get him to fall asleep and I'm really grateful for that. He was absolutely miserable but ended up falling asleep in the recliner. We let him sleep for a little while before we tried to move him back to his bed. Thankfully, we were able to move him to his bed without too many issues. I'm really, really hoping that Emmett feels better in the morning. I hate seeing him in pain and I wish there was more I could do. I'm going to go ahead and cut this short because I need to…

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March 3, 2019

Some #Autism parenting frustrations and obstacles

Last night was one of those rare moments in life where my wife and I had a childless house. While we might get a break or two a month, typically there's still someone home with us and makes it much less of a break. The reason for that is Gavin. Gavin causes too many problems with his brothers if all three of them are together at the same time. It triggers fighting and things get ugly. Unfortunately, there's really no getting through to Gavin because he's not one to learn from experience. Essentially, the problem arises from Gavin wanting his way, all the time when he's at either one of his Grandparents houses. He's very good at manipulation in these situations and as I said, it's very upsetting to his…

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March 2, 2019

Link / Lizze / My thoughts

My wife finally got her medical #marijuana card and here’s how it went

We had a really interesting day today and actually, it was quite positive. We made some major progress in our quest to find Lizze some relief from all that she suffers from. I mentioned in a sorta offhand way recently, that Lizze has been using CBD oil and is scheduled to be evaluated for a medical marijuana card. Medical marijuana has recently been legalized in the State of Ohio and since we've literally tried everything conventional to help her with her migraines, this was all we had left to try. The CBD oil has been helping but the goal is to have both options available in order to best ensure a better quality of life. Her appointment was yesterday and it went well. I'll let her go into the details…

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March 1, 2019

My thoughts

I’m a bit on edge today

We've got a really busy day ahead of us. Lizze has an appointment in Akron and it seems like they're running behind, at least a little bit. Gavin is with my Mom and if need be, the boys will be picked up from school by her as well. We aren't sure what time we will be getting home. It was going to be a close call to begin with but considering there are several people ahead of us and our appointment time was 10 minutes ago, it's gonna be awhile. 😔 Depending on how this goes, we may have a few stops to make on the way home. I'm tired and stressed out. I've been fighting a headache and I have a huge knot on the back of my neck.…

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February 28, 2019

My thoughts

The #meltdowns were frustrating but I feel like we won the day anyway

As with every other Tuesday night, the kids had therapy tonight. The bulk of it was focused on Elliott and trying to help him. I'm not sure if we really got anywhere with him because there are some significant issues with perception we're trying to overcome. The way he perceives things is sorta skewed and inaccurate. This leads to issues with communication and that's been leading to problems. While I don't think anything was resolved tonight, I want to give Elliott some serious credit for willingly sitting down and having a conversation about all of this. ☺ 💙 I know he didn't want to talk but he was very cooperative and did a great job of expressing himself, in what was a very emotional situation for him personally. I'm very…

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February 27, 2019

My thoughts

Please just stop it already

I'm feeling a bit frustrated this morning. If you follow me on Twitter, (if not you probably should 😉) you may have already seen my little rant/purge this morning. I thought I would explain my frustration here because it's easier than doing so in 280 characters. While I don't often talk about this, I've built up a decent following over the years. I'm verified on both Twitter and Facebook (which isn't easy) with much larger followings than the average person. I only say this to provide some context for this post. I've worked very hard to build this platform and I do my very best to use it for the betterment of the community as a whole. At the same time, it's also my job and because I'm a work…

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February 26, 2019

My thoughts

3 down and who knows how many left to go

Shortly after my last post, Gavin came running down the stairs to let me know that he thinks we caught another squirrel in the attic. I checked the camera and he was right. The trap hadn't even been baited and set for even hour before we caught this one. As I removed the trap, there was at least one more running around. Gavin and I went to release it before I dropped him back off at home and picked up the boys from school. I didn't have time to re-set the trap in order to try and catch the rest. I'll do that when I get home. Hopefully, I'll catch at least one more before we pull the trap for the day. We don't like to leave it up at…

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February 25, 2019

My thoughts

While we had some #meltdowns, I feel like we did pretty well this weekend

We had a pretty good weekend. I mean, we had our moments but all things considered, it was pretty good. The most exciting thing to go on this weekend was trapping squirrels in our attic. There were a few meltdowns and I some less than stellar parenting moments but we survived. Lizze is unfortunately, dealing with the return of her migraine. It's not as bad as it was previously but it's worse than it was after her headache infusions. We're waiting to see if her prescription for the Cefaly device is covered by insurance. We have the preventative one but Lizze needs the one that acutely treats the migraine she currently has. All the paperwork has been submitted. In fact it was all submitted while I was waiting for Lizze…

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February 25, 2019