Read more about the article The struggle is real and so is the toll
Autism Parenting Woes / Emmett John / My thoughts / PFAPA

The struggle is real and so is the toll

I just woke up from a four hour nap. I feel a bit better but I'm far from being back in my feet. This week has taken so much out of me, but it's also been an unusual week and on that hopefully won't be repeated anytime soon.  The fever disorder that Emmett struggles with has interfered with so much of his life already. It seems to literally dictated a large portion of it thus far, and that's not fair to Emmett.  When these happen during the school year, it's far more distressing than having this happen during the summer.  While I'm caring for Emmett while he's in a fever cycle, I'm not physically experiencing it myself. With that being said, I'm so exhausted from playing my part, I feel…

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May 6, 2017
Read more about the article What’s less than running on fumes
Emmett John / My thoughts / PFAPA

What’s less than running on fumes

Emmett is in such a foul mood today. His fever is back up to almost 102°F and he's a nightmare to deal with this morning.  Lizze and I are completely spent. We're so far beyond running on fumes, I don't know how to put this into words.  All I want to do is go to bed and sleep forever at this point. Fat chance that's going to happen anytime soon..  Zzzzzzzzzzzzzzz

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May 6, 2017
Read more about the article Barely surviving the worst fever cycle ever
Emmett John / My thoughts / PFAPA

Barely surviving the worst fever cycle ever

We've made it to the end of the week, and what a week it's been.  This week has brought with it a few firsts, and they have proven to be very challenging. Emmett began and is still inside of his worst fever cycle ever. We're at the seven day mark and he's still running enough of a fever to keep him out of school.  I really don't know when this cycle is going to stop, but they historically last about ten days. Having said that, there have been a few over the years that lasted every bit of twenty one days.  Lizze and I both love Emmett but we need him to go back to school.  I'm burnt the fuck out, and need a day or two without a kid…

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May 6, 2017
Read more about the article I’ll give you one guess
Emmett John / My thoughts / Partners

I’ll give you one guess

I spoke with Emmett's dentist this morning, explained what we were dealing with and apologized for the late notice. He said that it's best to keep him home and reschedule, and not to worry about it because he understood.  I hate canceling at the last minute for anything. I fucking hate it, but sometimes it can't be avoided.  As for Emmett's status today, he's running a fever. I'm sure you're all as shocked and surprised as I am, but it is what it is. He's in a good mood for the most part today, and that's a good thing.  I'm not the one physically going through this fever flare, but goddam if it hasn't completely worn me out. Emmett was up at 5:00 AM this morning and wouldn't go back…

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May 5, 2017
Read more about the article My wife and I have been going back and forth over this
Autism Parenting Struggles / Emmett John / My thoughts

My wife and I have been going back and forth over this

I've been trying to figure out what to do in regards to Emmett's dentist appointment tomorrow. I remembered that we've had a similar situation in the past and the office said that as long as he's not sick, the fever is fine.  The only difference between that and this is his mouthful of sores.  Lizze and I have been going back and forth over this, but it's not an easy decision. He's already not going to school because he's running a fever still. If it were just the fever, we would probably move forward with the appointment.  Unfortunately, he has a mouthful of sores and I'm pretty sure that's something they are going to notice.  He already has another appointment in June. Elliott and Emmett both do actually. They bumped…

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May 4, 2017
Read more about the article Trying to find the light at the end of this tunnel
Emmett John / My thoughts / PFAPA

Trying to find the light at the end of this tunnel

This fever flare has officially cost Emmett an entire week of school. Not only has it cost him the week of school but it continues to have a vice like grip on his body.  He's not currently running a high grade fever, it's still a fever at around 101°F on average.  We've taken to describing his tongue as a zombie tongue, because that what we image a zombie's tongue would look like.  I'm not sure how to handle his dentist appointment tomorrow. He's not sick, but it looks like his tongue is falling apart. I need to call and try to explain what's going on and see what they think. The other thing is the fever. As soon as they touch him, they'll know he's running a fever.  Frankly, Emmett's…

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May 4, 2017
Read more about the article I’m so overwhelmed I just want to cry 
Emmett John / My thoughts / PFAPA

I’m so overwhelmed I just want to cry 

It's been another exhaustive day in the house of freakishly rare, and frustrating medical conditions. Emmett wasn't at school again because of a fever. He's now been out of school since last Thursday, and while this is outside of anyone's control, it makes me uncomfortable.  The school is very understanding and we do t have any issues in that area, plus we do have a few notes from his doctor, but it doesn't cover everyday.  Emmett did pretty well today. He wasn't as moody as he has been, but his fever is still present. It comes and goes throughout the day. We have to adhere to the twenty-four hours without a fever before returning to school rule.  The problem is that while we may be confident this is a fever…

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May 4, 2017
Read more about the article Heartbreak: When Good News is actual Bad News
Emmett John / My thoughts / PFAPA

Heartbreak: When Good News is actual Bad News

Wow! Today has been one of those days where I gave it my all, and spent myself into a hole. I'm feeling really stressed out, overwhelmed, and worried.  There's a lot to discuss but for right now, I'm going to focus in Emmett. We learned something today that has me very, very concerned. This is one of those times, where what should be good news, is actually bad news.  Elliott went to school and was perfectly healthy. He wasn't happy, but he was healthy. Lizze was supposed to start class today, but a mixup with scheduling, postponed that start by one day.  While Emmett wasn't running a fever this morning, I was able to get him in to see his pediatrician. Lizze stayed home with Gavin, so as not to…

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May 2, 2017