PFAPA Archives - Page 3 of 6

All I can do is what I feel in the moment, is best

It's been a pretty good day today. The boys seem to be doing better and I'm hoping that they can both return to school in the morning. Elliott's fever is gone and he's feeling fine now. I don't know what was going on this morning. I don't know how Emmett will be doing but he's still only able to do shakes and is avoiding all solid food. If he's still not eating, I don't see how he can go to school. This whole thing is so frustrating because all I can do is what I feel in the moment, is best. There's no instruction manual and very little in the way of guidance available to help us know what to do. 😱 At least they seem to be doing okay…

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January 31, 2018

My thoughts

Please don’t get any worse

The boys are both home from school today. Emmett's par for the course with his fever flare and Elliott woke up the morning running a fever of 101.2°F and not feeling well. There's shit going around the school and it looks like it may have come home with Elliott. It's going to be a very, very long day. I'm hoping that whatever Elliott has goes away quickly and it doesn't spread through the house. That's the last thing we need right now.

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January 31, 2018

#Autism Parenting: Picking the BEST of the WORST options

We have therapy for the boys tonight but Lizze isn't feeling well and she will probably stay behind. It will likely be the boys and I heading out tonight. Tonight's focus is going to be on school for Elliott and Emmett. We have to figure something out because while the boys like school, they're also miserable at the same time, albeit for different reasons. This needs to be a very serious discussion about our options. I'm hoping Lizze feels up to going but but if not, we've discussed it amongst ourselves already and have reached a consensus. We both agree that the status quo isn't in the best interest of the kids. What we do about it is where we become less sure of ourselves. At this point, I feel…

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January 30, 2018

My thoughts

I have enough to worry about already

Elliott is off to school while Emmett is home because of a fever flare. I'm really proud of Elliott because he did awesome this morning. Neither one of the boys likes going to school without the other but Elliott has been be very good about it this week. Emmett is in rough shape but is currently working on his makeup work with Lizze. I sent the school pictures of his mouth and that helps to document his absence. I've been stressed out because of these new truancy laws in Ohio but I've recently decided not to give a single shit about them. Here's the thing - these laws were not written with kids like Emmett in mind. He's living with medical issues that can often interfere with school attendance. We're…

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January 30, 2018

Inspirational Posts / My thoughts / PFAPA

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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January 29, 2018

Emmett John / My thoughts / PFAPA

Please keep Emmett in your thoughts and prayers

I mentioned that Emmett would be home from school today. The reason for that is rather bad fever flare. I'm pretty sure it started on Saturday because that when the physical symptoms began. At first, it was just one sore on the inside of his lip, but as of Sunday evening, he's got several more. The poor kid is in a lot of pain and isn't eating much as a result. He doesn't eat enough on a good day, and this makes things worse. Right now I'm making him milkshakes and mixing SlimFast powder in for some nutrition. These are cold and numb his mouth enough that he can relax a bit. Unfortunately, it doesn't last forever, and he goes right back to being miserable. There isn't much we can…

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January 29, 2018

Elliott / Emmett John / My thoughts / School

We’re giving serious thought to homeschooling at least 1 of our 2 kids with #Autism, that are still in school

Full disclosure. I'm exhausted and having a hard time putting thoughts together tonight. I'm going to try and make this as coherent as possible but no promises. Lizze and I are seriously talking about the logistics of homeschooling the boys. Between Emmett's inability to wear clothes and Elliott's emotional struggles that are the result of several things related to school and severe anxiety. The main concern is Emmett though because his struggles physically prevent his attendance. Things with Elliott could be corrected with proper intervention within the school. The idea of homeschooling the boys is not something we take lightly, even in the it's just a possibility phase of talking. There are so many potential downfalls to homeschooling but at the same time, there is a substantial upside as well.…

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January 23, 2018

My thoughts

Trying to get exercise while doing chores around the house

I'm pretty proud of myself. Our dryer has been broken for a couple of weeks now. I tore it apart a week ago and discovered that it was simply the belt that was broken. I was able to order one on Amazon and it finally showed up today. Emmett, Gavin and I went into the basement and replaced the belt. It literally took less than five minutes. Gavin and Emmett each held a part in place for me while I put the new belt on. Emmett even used his little tool kit to secure all the screws again. They were both a big help and we are finally able to use our dryer again. ☺ I hate doing laundry but I'm excited to get the floors in as I take…

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January 20, 2018