Oh heeeeyyyyy

Hello!  Long time no spill my guts to you!  How ya been???

 

We’ve been GREAT!

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I can’t believe how long it’s been since I’ve written.  I was so gung-ho about this blog in the beginning, assuming I would write frequently and share more than just what was going on with Mira.  Remember when this was going to include thrifty fashion and travel stories?  Turns out that’s not happening.  Whoopsie!

 

I think when James and I started this, we needed a way to process and grieve, and the blog was an appropriate outlet for that.  We got a bit carried away, as we did with many ideas and emotions during that difficult time, and now that we’ve settled into the diagnosis and our reality, we find we don’t need this space as much as we thought we would.  

 

That being said, I have no intention of abandoning it!  And it’s definitely still my goal to exploit our family enough to gain world-wide fame and fortune, so I’m hoping this will help with that.  

 

There has been so much going on since last we spoke, my friends!  For your convenience, I will break it all down into an easy-to-read bulleted list, complete with sparkly pictures and ultimate skimability.

 

*I turned 30.  

I was mega bummed about it during the highly over-dramatized (on my part) lead-up to the big day, and then it happened, I got drunk in my jumpsuit, laughed with my closest friends (thanks for all the booze, guys!), and broke open my own pinata on the first try.  So basically, I got over myself real quick and am already owning this decade like the boss bitch I am.  SUCK IT, THIRTY.

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* I went on my first work trip.

It was really fun and cool!  I got to go to Chicago and rub elbows with lots of very smart, dedicated medical educators, I learned a ton, and most importantly, I have lots of support at work to pursue some of the ideas I got while I was gone.  I made a couple new friends and enjoyed 2 days to myself to not have to worry about things at home.  I missed my fam, of course, but sometimes a girl just needs a $20 glass of wine and roasted bone marrow alone at a bar, ya feel me?!

Not my best look, but the only proof I was there.  

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*Mira had her first dystonic event (no pic).

Not nearly as cool as the event above.  Many of you likely saw on Facebook, but basically, James got a call from Mira’s school on a Friday afternoon to let him know that something weird had happened with Mira and they didn’t know what, but thought we might want to take her to the ER.  James called to tell me as I was about to shut off my phone for take-off from Chicago.  Ahh timing…Best.  Flight.  Ever.  Long story short, we alerted neurology that something odd had happened (oh, and this “something odd” is that she went totally rigid for several seconds, then screamed bloody murder for several minutes afterward) and they recommended we take her to the ER, saying they’d give the ER a heads up.  

 

Well…we waited there for 4.5 hours and Mira was never seen by a physician.  I won’t bore you with the details of how pissed we were.  We eventually stormed out around 9:30 pm.  James spoke with a patient advocate the following Monday and they were really apologetic, but the ER staff the night of suuuuuuucked.  We learned that she was triaged as “urgent” and they did, in fact, have advance notice she was coming, and she was still never seen.  I totally get that a children’s emergency room on a Friday night probably has a lot more going on than “my kid maybe just had a seizure”, but the whole experience still really bummed us out.  

 

We spoke to her neurologist about it and he basically said not to ever bring her back to the ER unless she was acting super weird for a long time after the event.  He was fairly confident that dystonia is what caused the episode, as the screaming afterward indicated that she was in a lot of pain, which wouldn’t have happened after a seizure.  Anyway, something we’re definitely monitoring, but for now, she remains unmedicated.  Nothing similar has happened since, although her movements are definitely increasing in frequency and variety.  She has this new whole-body twitch thing she does, which is actually really cute the way she does it…but still not something I want to see.

 

*Mira celebrated her first Easter that I thought she’d think was cool but she didn’t and she won’t remember it and it ultimately didn’t matter.

That about sums it up.  I went really out of my way to make it special for her, and she was like, “IDGAF”.  Rude, Mira.  Rude.  No more holidays for you.

 

*Mira got a new neurologist and we’re stoked about him.  Oh, and also Mira is def gonna have to get brain surgery at some point.  Oh, and she got a new general pediatrician, too, and he’s the shit.

We are SO HAPPY about Mira’s new care team.  We really liked who she was seeing before, but they weren’t the right fit for her.  She’s now seeing a neurologist who we trust fully to deal with her unique condition, as he’s the only practitioner we’ve encountered so far who has even heard of GNAO1 mutation, let alone taken an interest in it and contributed to the small (but growing!) body of research.  He has even performed deep brain stimulation surgery on a kid IN KANSAS CITY WITH THIS MUTATION.  That’s huge.  And…it’s been A TREMENDOUS SUCCESS!!!!!!!  So he has plans to perform the same surgery on Mira at some point, we just have to wait awhile longer to see if we think it’s worth arguing with the FDA for a human device exemption prior to the approved age of 7, or do it when she turns 7.  We’re hoping her movements remain controlled enough to hold off until she’s at least 7, but because the procedure has been proven to be so effective in managing this condition, we’re willing to do it whenever she needs it.  And her new pediatrician is just so awesome.  He works with lots of special needs kids and he just gets it.  It’s love, y’all.  

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BTW, in case you were wondering, yes, the thought of my child requiring brain surgery at some point in the not-so-distant future is utterly terrifying and as I’m typing this I feel like I might puke.  But I won’t, because I am dignified and refined, yes, like a queen, that’s right…and I already don’t have any friends in my office so puking right now would only further isolate me.  

 

*Mira turned into a big kid.

Just look.  

 

*Mira got her first EEG.  

We just got the results, and they’re abnormal for a “normal” person, but expected based on her condition.  The electrical impulses are slower on the left side of her cerebrum than on the right, but no seizure activity was indicated and it doesn’t appear that she’s necessarily prone to them either.  So for as crappy as the experience was of getting an EEG, we’re very relieved to hear the results.

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*I found a picture of corn at my workplace and I’m obsessed with it.

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*I suddenly starting crafting and now I’m addicted to DIY.

I don’t know why I just up and decided to start making things, but I did, and there’s no looking back (unless I drop this hobby like I’ve dropped literally every other one I’ve ever had).  

 

*Mira got lots of cool new shit.

As many of you have seen, Mira is becoming what’s known as SPOILED. 

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She’s not actually spoiled, and even if she were, so what?!  She deserves everything she’s gotten and way, way more.  We are over the moon about the equipment she now has access to at school, as well as the amazing car she received from the GoBabyGo team through VarietyKC.  She’s even a cover girl!  

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So there you have it, a perfect synopsis of what’s been going on in our little self-absorbed world.  James and I, as always, remain very much in love with each other, with our daughter, and with the community who has surrounded us with support and compassion.  

 

Love to all,

 

Nikki

3 thoughts on “Oh heeeeyyyyy”

  1. OMG, where is that corn picture located? will you take me on a field trip to it? also, you guys are amazing and Mira looks great behind the wheel of her new ride ❤

    Like

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