Tag Archives: PFAPA

I hate feeling powerless

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It’s now 1:47 AM and Emmett has just now fallen asleep. We’ve been trying to help him for hours upon hours. He has a really bad tummy ache and feels like he’s going to puke. This is stressful for any kid but it’s especially so with a kid like Emmett…. Read more »

He’s 18 years old on the outside but not on the inside

Gavin’s having a rough time today. He’s eighteen years old now but can’t be treated or managed like a typical, freshly minted adult. Unfortunately, Gavin’s cognitive ability is significantly lower than his chronological age. Until we have his new NeuroPsych testing done this summer, we won’t know exactly how much… Read more »

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… Read more »

A super quick and important update

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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… Read more »

We might be approaching the end of the road

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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… Read more »

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… Read more »

Prepaing the new school week

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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… Read more »

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