PFAPA Archives - Page 2 of 6

There’s way too much shit to worry about as a special needs parent

I've been playing a very frustrating game of phone tag with the pharmacy this afternoon. I need to make sure they either look out for a fax from the lab or call and have it faxed over because Gavin needs his refill tomorrow. I cannot stress enough that Clozapine is the most tightly controlled medication in the United States for a reason. You do not fuck with this medication and it has to be taken seriously. The fucking stress that we experience simply because of this goddamn medication is inexplicable. I also reached out to his doctor and asked that they immediately email with the results of his his labs because I'd like to sleep tonight. They do that anyway but I feel better reminding them. They know how serious…

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February 15, 2018

General Update / My thoughts

A super quick and important update

I'm keeping this short and sweet cause we're getting ready to head out the door again. Both the boys had good days at school. They came home in a good mood and are feeling good about going back tomorrow. ☺ If I could pick only one thing to go right today, this would have been it. I'm so relieved that everything went well.. ☺ Many of you will recognize the significance of surviving a significant change to your ASD kid's routine. It's even more amazing when they not only survive it but totally own it. I'm proud of my little minions.... ☺

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February 6, 2018

Emmett John / My thoughts / PFAPA

We might be approaching the end of the road

This fever flare is driving me nuts. I know it's worse for Emmett but I'm still having a really hard time getting him to eat anything. He's had a bit of yogurt, some pudding and I just got him to eat some brown rice. The brown rice was a pretty big surprise actually. The problem is that he's not eating much and there's very little that we can pack in his school lunch and be sure he'll eat any of it. He's not being picky, he's just in a tremendous amount of pain. He's getting a new sore on his cheek and that's probably what's keeping him from eating now. He's been complaining about it today. Thankfully, that's one of the only new sore he's presented with for a couple…

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February 5, 2018

Emmett John / My thoughts

He’s not a typical kid and this isn’t a typical situation

I'm concerned that Emmett is going to be very difficult to get to school in the morning. His mouth sores are getting better but he still has a big one on the inside of his lip and it hurts me just to look at it. Poor Emmett is still in pain but we're sending him to school and as of bedtime, he's okay with that. He was worried about his pants but we told him he can wear his old pants. Shirts won't be too big of an issue and neither will his crocs. The big issue, or rather the two big issues will be his lunch and his makeup work. He's very worried about what he's going to eat for lunch because a lot of things still hurt his…

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February 5, 2018

My thoughts

Prepaing the new school week

The boys had a pretty decent day. Gavin spent most of his time in his bedroom, most likely because he was on a mission to save the Universe from pending fake. Elliott and Emmett got along pretty well for most of the day. Emmett worked on some of his homework but towards the end of his time working on it, he became very stressed out and ended up having a decent size meltdown. Lizze is still under the weather but she's moving around a bit more. We have zero plans for tomorrow, aside from laundry and getting lunch supplies for the new school week. We're going to have to work with Emmett a bit because he will be returning to school Monday and he's going to be very nervous. I'm…

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February 3, 2018

Emmett John / My thoughts

Things went horribly wrong this morning

I'm going to keep this super short because I'm exhausted. Emmett woke up and wasn't doing well. We tried for over an hour to help him feel better and nothing worked. He became hysterical as we tried to help him decide what pants he could tolerate. He has a new sore on his upper lip and that has him teetering on the edge to begin with. We know he tried and there wasn't anything that we could do. Our hope is that by Monday he'll be feeling better. For the moment, this has been an unbelievably exhausting morning.

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February 2, 2018

Emmett John / My thoughts

I wish I could do something to help him

The morning was rough. I didn't get nearly enough sleep because I was up with an Emmett who was in a great deal of pain. I let Lizze sleep and she let me sleep in, while she took Elliott to school. Teamwork... ☺ Emmett's in a good mood but at the same time, he's miserable because he wants to eat solid food. I looked at the sores on his lips this morning and it looks like there's another one popping up. I wish there was something that could be done but there isn't. This is one of those things that we don't know much about because it's incredibly rare and there's no research being done as a result. One of my readers brought up something called Magic Mouthwash. I think…

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February 1, 2018

Emmett John / My thoughts

That doesn’t Bode well for the rest of us either

I totally thought Emmett there was a real chance that Emmett would be returning to school this morning. He seemed to be doing better-ish last night and I felt a surge of hope that this flare might be coming to an end. Unfortunately, Emmett woke up about 4 AM and was sobbing as he climbed into bed next to me. All I could get out of him was that his the sores in his mouth were throbbing. Apparently, he isn't doing even a little bit better. I I'm absolutely exhausted but I'm trying to make sure Emmett is as comfortable as possible so he could hopefully go back to sleep. It's going to be an extremely long day for all of us because he's miserable and that doesn't bode well…

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February 1, 2018