Sick Kidlette

Rosebud is having a procedure done under general anesthesia today. She’s having some dental work done and also her second endoscopy monitoring her EOE. This is her second endoscopy in 2 months.

She also has a condition called Mastocytosis, meaning her body makes too many mast cells. Those extra mast cells can result in anaphylactic reactions to very odd stimuli: for us this includes ibuprofen, temperature changes, and stress. Because of this, general anesthesia is extra risky. She’s on 3 extra meds to keep her from reacting today and I’m sitting in the hospital waiting room twitching. She didn’t have a reaction last time, but I have this sense of dread when I’m not able to personally monitor her.

Having a sick kiddo is worse than being sick myself. First, Rosebud is NOT a stoic patient. She’s 2, for heaven’s sake, and already greets the sight of a person in scrubs by screaming “No pokes!” More subtly, though, when Rosebud and Jujubee are doing poorly I have to ask myself what triggered them. Did I miss something and accidentally expose them to a known trigger? Are they developing a new trigger? Is this the dreaded idiopathic reaction? I can be philosophical about my health, but I have no calm at all about theirs.

Ordinary Times

Nothing special to report today. The dog lives on, sweet girl. The weather is increasingly spring-like, though we could still get snow in Denver before the month ends.

My energy is strange today. My doc suggested that I shift one of my meds to AM dosage instead of PM and it does seem to make a difference. I’m not more awake, and inertia remains an hideously powerful force in my life, but there is a meditative quality to my lethargy that is quite pleasant. Instead of being worked up over what I should be doing, I’m able to simply rest. Once I do get my butt moving I’m pretty productive.

Take today. I got up at 0845 with the girlies, arranged breakfast then laid down on the couch to doze while they ate. I was up and down, alternating between taking care of the kids and dozing on the couch until 1130. Then I got dressed, wrote a blog post, started the laundry, made lunch, played a very small amount of a video game I haven’t indulged in in eons, and now that the girls have eaten I am back at writing. I feel strangely good. Small changes in routine, med management, and lifestyle can really make huge difference.

A week ago, admittedly during the worst part of my cycle, I was self injuring and crying uncontrollably. Now i’m contemplating a walk with the kids, grocery shopping, and speaking to the neighbors. My girls have made friends with the girls next door, which is totes adorbs, but I have not yet managed to get to know the parents. I’m not good at small talk and the idea of getting to know them is terrifying. Today, though, I’m able to contemplate it a little.

Crying in Public

At the dentist last week we got bad news. In response to this bad news, I did the entirely rational thing and burst into tears. I managed to contain it in the car in the parking lot, but it was still utterly embarrassing.

I was set off because both of my girls need fillings. Big Jujubee was supposed to be getting hers, but the laughing gas wasn’t enough to keep her calm. We had to schedule an appointment for oral sedation in the office. Little Rosebud’s cavities developed like lightening, and now she’ll need to be under full anesthesia for multiple crowns in April.


Sabine Wren?

Rosebud found the helmet and the dress in the dentists waiting room, and it was focusing on sharing little baby cosplay with everyone on the internet that got me centered enough to move forward. I’m still having nightmares about the tooth troubles, but the kids are going to be ok. I keep reminding myself that we did our best with their teeth, and this happens sometimes.


Stressful Days

We are less than a week from closing on our new home! Around the house, we are trying to pack and purge and clean. That’s the plan, anyway.

Naturally, Juju Bee has come down with a cold and Rosebud is threatening to catch it, too. Juju has grasped her own desire to move for about 9 months and even ran a little store selling fairy garden decor to earn money “for a house with a yard.” Now that is becoming real, though, she’s scared. She’s never moved before.

Change is hard for little humans, especially spectrumy ones. So we pack slowly, and we talk about where her things will go. We have a property walk through next week and we’ll have her help us draw a floor plan.


Rosebud is be too little to even play at being rational. Her toys are only getting packed when she’s asleep or not home because she becomes a creature of sound and fury when she sees her things go into boxes.

Alex, of course, is still in classes Monday – Thursday. This is a critical semester because he can finally start taking his professional exams once he passes these. He’s compartmentalized pretty extensively, but it doesn’t change that he’s weirder than a glow-in-the-dark three headed salamander these days. He is doing an absolutely wonderful job of being supportive, and he’s keeping up on his school work, but the stress has brought back his migraines and upset his gut. Poor man.

Me? I’m blessedly in my pre-ovulatory phase, so my hormones are not contributing to the issues yet. I’m anxious, though. I want to be working on the house. The condo is growing less livable as it fills up with boxes and the clutter combined with the psychological pressure is pretty awful. My heart races and my hands shake and that’s before I’m carrying boxes or laundry through the hallways choked with packed storage tubs.

How am I coping? Well, I have made the poor choices to skip workouts twice and binge on Halloween candy. I’m not eating enough green or protein I’m making lists and schedules for when we can finally move toward the new place and sitting at the desk staring at stuff the kids keep dragging out. None of this is good.

Resolution? Once I get Rosebud down for a nap I will dose Juju with more elderberry syrup then wade into the morass of things to pack for at least one box.