Meltdowns Archives - Page 297 of 299

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

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

My thoughts

Gavin seems to be losing this major skill and it’s heartbreaking

We have discovered Gavin is having some newer challenges recently that are really heartbreaking. Aside from all of Gavin adventures with his team of super best friends, one of the things that Gavin truly loves to do is play Minecraft on the PlayStation or Xbox. This is how he passes the time during his IVIG infusions. Unfortunately, he's begun struggling with this lately. He can still build some pretty amazing things, but he's forgetting what buttons do what. This means that building is becoming very frustrating for him because he's constantly pressing the wrong button and accidently destroying what he builds. This is a newer issue and I'm not entirely sure what to make of it. Using a controller seems like a muscle memory kinda thing and aside from reminding him…

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May 3, 2017

#Autism Discussions / My thoughts

How has #Autism impacted your life today

It's incredibly important we talk about how Autism can impact a family. This isn't about blaming a child or hating Autism. This is about dealing with the reality of what is very likely, a difficult situation. It's important for people to understand the ways that raising a child with Autism can impact the family unit. It's sadly taboo for a parent to be honest about the challenges they face while raising a child with Autism. I've called bullshit on that for the last eight or nine years that I've been a public figure in the Autism community. Reality isn't always pleasant and it's certainly not always pretty. The reality when it comes to Autism, exemplifies the above sentence. How can we expect the people around us to better understand Autism…

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May 3, 2017

Autism Parenting Insight / My thoughts

These are just words – Imagine having to live it

Today's been okay in some ways and a complete disaster in others. Lizze got off to class this morning without a problem. That's good because after the mixup yesterday, she was worried. Emmett was running a high fever again and let's just say, he's not in a good place. Everything is amplified for him right now, and he has a less than zero frustration threshold. That's proven to be challenging. Elliott went to school however, he wasn't comfortable being the only Gorski in the school, but that's something he just has to get over. Shortly after noon, I received a call from the school because Elliott had a blister on his foot that had recently burst and it hurt really bad. At the very same time, I'm texting with Lizze…

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May 2, 2017

My thoughts

Another day another fever

Emmett is of course running another fever, and is currently watching Ben 10 on TV. Elliott didn't want to go to school today, and was nervous because he would be at school alone. He did end up going. Lizze began DBT therapy today and was on her way before the boys were even up this morning. I'm exhausted and hoping Emmett will lay done for a little bit so I can grab a nap.

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May 2, 2017

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

My thoughts

Why today isn’t going right

Nothing is going as planned this morning. That shouldn't surprise me because very few things go as planned in my life. Elliott was fine this and made it to school. That's awesome. Emmett sees his pediatrician this morning, and we'll hopefully figure out what he has going on. Unfortunately, Lizze missed her first day of DBT therapy because her transportation never showed up. That problem is fixed now and going forward, we should be okay. She's really stressed out of this whole thing, but it is what it is at this point. The icing on the cake is that the direct deposit we'd been expecting, didn't show up. When we called to enquire about it, we're told it should hit tomorrow, but for less than half the amount it's supposed…

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May 1, 2017