Have I said how much I hate 2020?

Emmett's not been having a good week in regards to school. He's been in a fever flare for going on a week now and that's likely contributing to his struggles. As crazy as it sounds, I hadn't put two and two together until this morning. He's been doing well since returning to his old school. This morning he woke up not feeling well and I tried to help him work through it but he's miserable, so I let him go back to sleep. The antivirals haven't really helped reduce this particular flare yet and he's still in a lot of pain. At least he can find some relief if he sleeps. I called the school and Emmett will do on today's work when he wakes up. There's a lesson learned…

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Emmett just hit a fever cycle

Recently, there was a delay in refilling Emmett's antivirals that he takes for his fever disorder. With all that had been going on with Gavin recently, I'd opted to use this opportunity to see how he did without them. He did really well for about 2 weeks but just in case, I addressed the issue that was preventing his script from getting refilled. He's got several of these in his mouth. They're very painful and related to his fever disorder. Unfortunately, Emmett hit a fever flare for what I think is the first time since lockdown. I can't remember the last time he had a flare up. It appears that he needs to stay on the Acyclovir going forward. It only took 2 weeks for the mouth sores to come…

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Special Needs Parenting – What it feels like to watch your kids suffer

I've been working for almost a decade to help people better understand what Special Needs Parents go through. Whether it's Autism, ADHD or even fragile health, there's a story to be told and insight to be gained by reading it. Every family's experience can and will be different. Even families dealing with the same diagnostic challenges can and will experience different problems, even though their kids share the same diagnosis. I wanted to attempt to explain what it feels like having to powerlessly watch my kids suffer. The most recent experience I've had, I'm stilling actively living through, and it's in regards to Emmett. Emmett has been living with a very rare fever disorder known as PFAPA. The disorder means that Emmett runs idiopathic fevers. Idiopathic means that the fevers…

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Emmett’s running another fever tonight because what’s 1 more missed day of school 

Emmett spent the evening in the worst mood imaginable. He had a zero tolerance for everything. Several meltdowns were had in a relatively short period of time, with each one being as unpleasant as the next.  I decided to check Emmett's temperature and son of a bitch, he's running a fever. It's low grade and just under 101°F, but it's another piece of the puzzle.  Unfortunately, the school has a fever policy and anyone with a temperature of 99.5°F is sent home. They've bumped that up a little bit for Emmett but at the moment, he's still over the limit.  We've been suspecting for a few days now that he was hitting a fever flare, but the demeanor and fever pretty much confirm it now.  He has state testing tomorrow…

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