Tuesday, December 8, 2015

switch tripped

It's like a switch tripped. He has been a complete and total joy since he woke from his very extended nap yesterday. This is good news, mingled with yuck. It's a signal to me that yesterday's moodiness (and sleepiness) was pointing towards subclinical seizure activity. As his neuro likes to say, "cranky kid - cranky brain". Ugh. 



On the upside, though, the sentence he just blurted to Miss ABA totally melted me in his beautiful syntax and lots of words-ness... 



Guess what?! Yesterday I eat too much pepperoni and me got sick! 



Look at all those words in a row! Look at that nearly perfect grammar structure! 



This boy. <3 p="">

Monday, December 7, 2015

wishing it were easier to know what's wrong

I like to share the heart warming anecdotes from our life with Trevy. It helps me remember that not every moment is heavy and heart wrenching. Particularly when we smash into the angst times.

Like now.

After his larger (most likely) complex partial Friday night my whole body (centralized in my heart) has been coiled tense.

Epilepsy is a thief, stealing away bits of him (of us) all the time. Development. Health. Peace. Breath... Because it's impossible to breathe normally when his life is unstable.

Which is precisely how it feels right now.

Unstable.

Combustible.

Treacherous.

Volatile.

I witnessed two very quick myos over the weekend. Hardly worth noticing, really. Except that...well...they're seizures. And every seizure is a serious seizure. Even the innocent appearing.

Actually, it's a soapbox of mine. The attempt to down play one seizure type over another. It's not a competition.

Let's just settle this right now. There is NO such thing as a good seizure. There is NO such thing as a harmless seizure.

That said, I'm thankful that I've only seen very quick, isolated myos.

However, his mood has continued to become increasingly destabilized. He spent the entire morning in crying non-compliance. Telling me he was NOT going to school. Adamant that he just wants to sleep. Real tears running down his cheeks. Evidence that what is going on is more than just frustration over being told no when asking for a Yoo-hoo.

Something is not right.

But what?!

What?!

That's what I need to know. That's what keeps me awake nights. And weighs me down with a tangible heaviness of dread. I feel it pressing against my soul. The not knowing is what has prevented me from reaching out to his neuro before now. His mood has been flagging for weeks. I've been doing my homework. Eliminating all the "normal" triggers. Sickness. Fatigue. Diet. Until the only choice that remains is neurological. Be it seizure activity or simply poor neurological health. I don't know. I just don't know. And frankly, the answers are elusive more often than not.

I love this boy fiercely.

I just want him to be happy and healthy. The two are so closely woven that when one is disturbed, undoubtedly the other is as well.

Sunday, October 18, 2015

all the bodies

As we pulled into church this morning I realized that we'd forgotten Trevor's am meds. Jonathan and I groaned in unison. It was decided that just Trevy and I would head home for a quick med administration.


Trev was thoroughly confused when everyone but he and I exited the car.



As I was pulling away he said: But I always go that way.



He was pointing back at the door to the church.



I tried explaining that we were going on an adventure. He wasn't buying it and started line iteming: I miss Daddy. I miss Toby. I miss...



In a last ditch effort to get me to turn around he cried: I miss ALL the bodies!



He meant "everybody". It was adora-larious in the way that only Trevy can be.