11SOL24 sick house

Yesterday we had my son’s Scout Blue and Gold Dinner. We packed up the whole family to go together. Even Great Grandpa and Regular Grandpa joined us. George was so excited to win a trophy for the Pinewood Derby Backwards Race. McKenna and George both ran around with friends while Theo spent most of the time snuggled up on my lap. I assumed it was the damn DST messing with my usually feral toddler.

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10SOL24: look. squirrel.

TRIGGER WARNING: talk of depression, anxiety, ADHD, and systematic failures in ND diagnosis for women—this is also pretty lengthy

I had long suspected it. More in that…oooh…squirrel kind of way than the windup toy kinda way. Can you visualize the difference? It wasn’t that I couldn’t attend. It’s just that I would attend to all the wrong things. Like…put me in front of a spreadsheet and I could work that data while the building burned down around me. But I just couldn’t attend to things like following up on doctor appointments or keeping up with laundry.

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9SOL24: Ralph and Felix

Way back when the world stopped…for just two weeks…George took a sudden liking to a babydoll that had been sitting in the corner for months. I actually SLICED about it all the way back then. Since 2024, Ralph has become a permanent fixture around here. We’ve expanded his wardrobe just a bit with Bitty Baby sized clothes from Amazon. American Girl really has to do better with having gender neutral or boy inspired clothes. Their options are…limited…at best.

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8SOL24 + FMF: dedication vs motivation

Today’s crossover event is brought to you by Five Minute Friday and Two Writing Teachers. I am publishing for their 17th annual Slice of Life challenge. Today’s FMF word prompt is dedicate. The rules are simple. Write for five minutes. There is no extreme editing; no worrying about perfect grammar, font, punctuation. It is unscripted. Unedited. Real.

Have you ever considered the difference between motivation and dedication? Think about it. What comes to mind? As someone who struggles with motivation but is actually highly successful, one would assume that I am very dedicated.

One would be wrong. 
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4SOL24: 2 years and counting

Four years ago, in the early stages of the “two week pause”, my middle man kept getting sick. I mean—he had been in daycare since 10 weeks old and was always getting this bug or that. So being sick was normal. We had gotten used to the dreaded it’s just viral diagnosis. But it was pretty weird when we were literally never leaving the house that he kept getting sick.

Then the mild virus which caused a random low grade fever that was easily confused with teething progressed into OMG! This fever is SO high! Do I need to call an ambulance? I clearly remember the first time I saw a 105* temperature pop up on the thermometer. Aaron was working from home—as we had all started doing. I screamed for him as I carried George’s still body to the bathroom to run a tepid bath. I tried to get him to take some ibuprofen or acetaminophen but he just couldn’t do it.

How long had it been since I had last given it to him?  Was it too soon?  Did it even matter at this point?  

I called the doctor and they were stumped. In those early pandemic days, doctors had their nurses triaging over the phone. If you were lucky, maybe they would see you in parking lot or empty office. Not even kidding. Ours was treating every child as if they had a viral infection. You couldn’t even get a Covid test at that time—remember that? George had 4 fevers over the course of 10 weeks and they hadn’t seen us even one time.

I was a few weeks from giving birth to my youngest by this time. I was about to lose it on the triaging nurse if she said to just treat the symptoms again. But, luckily, she agreed that it was time for him to be seen by a physician. We went to the office all masked up. He definitely had inflammation in his lymph nodes. The doctor thought it might be best to run some bloodwork—on a hunch.

heading for in for bloodwork
post bloodwork

That bloodwork revealed some out of control inflammation that was highly abnormal. She followed her gut thinking maybe it could be something called Periodic Fever Adenitis Pharyngitis Aphthosis or PFAPA for short. She had never seen another patient with it but she had just read a journal article about it. There seemed to be a rise in the diagnosis of PFAPA due to the pandemic. It could no longer be just a virus and doctors started to investigate further on their repeat fever kids.

yet another fever cycle

The pediatrician didn’t even know how to begin treatment as this was way out of her wheelhouse. She referred us to a pediatric infectious disease doctor to make sure we weren’t missing something. That doctor referred us to a pediatric rheumatologist. After some additional testing and bloodwork, it was confirmed. It took almost a year to get the official PFAPA diagnosis. During that time, George had an additional NINETEEN fever cycles.

heading to see the specialists

They all started the same with deep, dark bags under his eyes that looked like he hadn’t slept in weeks. He would eat everything in sight for a few days as if he was a camel filling his hump. It was a good thing he did, because the next 5 days brought nothing but 105*+ fevers, sleep, and the occasional sip of water. But that was about it.

On his worst nights, I would draw up ibuprofen and acetaminophen syringes placing them on a plate on my nightstand. I would set a multitude of alarms and then label it with the coordinating medication for every few hours. He would sleep with us every 18 days for five nights straight. Every 180 minutes, my phone would announce it was time for him to be medicated. I would take and then diligently record his temperature in the dark while carefully giving him medicine in a dream state.

part of our nightly routine

The routine repeated for another year. Then on March 4, 2022, he was scheduled for surgery. They removed his tonsils and adenoids which should have been done long before. Thank you, Covid, for preventing SO many “elective” surgeries.

surgery day

We haven’t had a fever cycle since. I sometimes think he has had a feverless cycle. I can see faint under-eye circles. He will complain about joint pain or a headache. His appetite will pick up then mysteriously disappear. His sleep will deepen and he will be extra clingy. But the fever never comes. And for this we are grateful.

all the jello he could eat

Tonight I asked George what he remembers about his fevers and surgery. He only remembers eating jello in recovery. As for the fevers, he remembers feeling bad. All the time. He remembers his body feeling yucky. He asked if the fevers would come back and I reassured him they wouldn’t.

But could they?  Maybe. But no sign of it. 

I’ve heard nightmare stories about diagnosis taking years and years and years. I’ve read about doctors refusing surgery due to lack of throat infections and insurance companies denying coverage. We are so fortunate for a doctor who thought outside the box. We are forever grateful for specialists who diagnosed and treated quickly.

He’s a new kid since the PFAPA remission. His language blossomed. His creativity soared. He grew FIVE full inches! He’s super smart. His favorite things to do are play with his brother and beloved babydoll, Ralph. He’s an artist and a gamer. He’s full of passion and sass.

And he’s healthy. He’s so healthy and so happy. 
so healthy and so happy
I am writing for the 17th annual Slice of Life challenge presented by Two Writing Teachers.

2SOL24: here we go again

At least once each slicing season I write about one of my kids being sick. I usually write on this topic 2, 3, 4 times because…kids…

Germbags. Am I right?

The cough has been lingering for WEEKS. There were nights a good month ago where I took him to the couch so the rest of the house could rest without that hack, hack, hacking cough in their ears. This morning was no different than most others over the last eleventy hundred days.

6:15
cough. . . cough. . . .
cough. . cough. . .
cough. . . cough. . cough. cough cough
cough. . . .WAHHH! MAMA!

I go to comfort him but he’s already climbing out of bed. Big brother is crying because he JUST. WANTS. TO. SLEEP.

Me, too, buddy. Me too. 

And so we are up. What is there to do at 6:30 when the house is asleep but he is roaring to go? Watch some Taylor Swift, of course. I confirm which Era he wants already knowing it’ll be wherever Trouble Trouble is featured. That’s the Red Era for all you non-Swifties out there. We settle in to watch and sing along while dad readies for the day. I’m commanded to toggle between requested songs as if I’m playing tracks on a CD rather than a video.

He has his favorites. It’s not his first TS rodeo. 

And so we wait until the rest of the house is ready to join us. They will demand Minecraft simulation or makeup tutorial videos. but for now we will Shake It Off while the rest of the house is still enjoying their Wildest Dreams.

Just some of my favorite Theo sings Taylor images and videos.

Just living his best life watching Taylor on Mom’s floor.
Shake It Off? No. It’s Shake Your Butt.
Lover
The Antihero mumble
Her name is Taylor Sings. Obviously.
It’s Trouble Trouble
I am writing for the 17th annual Slice of Life challenge presented by Two Writing Teachers.