it's all just so annoying

It's more annoying than anything.

Okay.  So that's not entirely honest.  Because changing his meds scares the absolute crap outta me.  

But it's annoying that we have to repeat the stick so soon.

And it's annoying that the results of the last draw are getting to me.  In the head.  And heart.  

It's annoying to still feel scared.  I thought I was long past this phase.  I thought I had grown some.   

And, as an aside, people in my "other" (meaning non seizure) life are annoying the crap outta me lately too.  Especially those who have little to no clue (or compassion) on the fact that life with Trevy affects every facet of who I am.  We had someone sit in our living room and criticize our leadership two months after half of Trevy's brain was chopped out of his head and say to us point blank, "Well, it's been two months".  Like, duh, you should totally be over it by now.  I mean, two months, really...it's time to let it go and let God.  Sometimes I can't stand so-called Christians.  And though I crave to be a Grace-Filled woman.  Every time I see certain people the voice in my head screams, "YOU SUCK".  Clearly, I have some bitter issues to work through.  Because I just know someday my lips will betray me unless I do.  Probably it will be after taking a phone call from Dr. Neuro telling me we need to repeat labs ASAP because the results of the last draw weren't good. 

Which is the call I took this weekend. 

All of Trevy's med levels are low.  Not good.  Even more not good...his platelet levels are low too.  Which may or may not be a lab error.  Which may or may not be linked to Dilantin.   Until we know we can't even increase his dosage to bring him therapeutic. The platelet levels were low enough that Dr. Neuro asked if I was noticing any extra bruising on Trevy's little body.  The good news is...I haven't.  The bad news is... 

We have to repeat the labs.  Jonathan is actually there right now.  Hopefully getting it done.  I say hopefully because rare is the day we arrive to the lab and not run into any issues.  Like, the orders not being in.  Which just drives me absolutely bonkers.  Especially, because we have to do the draw before Trevy's am dosing.  Which means he's late on his meds.  And his levels are already low.  Which brings out my Mama Bear side because we're only working with half a brain now, people!  

So I'm sitting here alternating in my head between...

Please call, Jonathan....Please call, Jonathan...Please tell me you got the draw done...

and fighting off the urge to send YOU SUCK emails to random annoying people. 

HOLD THE PRESSES...the phone is ringing! 

::big fat sigh of relief:: 

The labs were drawn.  Now we wait. 

And Jonathan confirms Trevy's adorable deliciousness yet again.  Evidently, as soon as Trevy started to realize where they were he began with the,


So sweet.  In that slightly morbid Seizure Mommy sorta way.  After the poke water works stopped  Trevy even repeated Daddy's,

"Thank you"

Followed by an immediate and emphatic,


I mean, really, how cute is that?!


JSmith5780 said...

Glad it's over. Hope you get the (hoepfully good) results quickly!

MJStump said...

You totally said it all....you know, all the stuff I think and feel so often and just can't really get out.

Love you for this!

another mother said...

Too cute . . . and I'm a non-seizure mommy, but people are obnoxious. Your son's major brain removal is something that you will never "get over". While it is easy to pay lip service and say that I would just be all sunshine and faith in God if faced with the same situation, I know deep down inside that it would be a battle that I would have to fight daily. I would most likely loose on a lot of days, but like you I would keep pressing through. . . hoping for that day when I could truly "let go and let God". Don't let insensitive jerks bring you down.

Debbie said...

you are in my thoughts and prayers...

Anonymous said...

There is a bright side. You may only need to increase his dosage! That's way better than a med change or . . .??

Hopefully the low platelets was just a fluke. I usually have the doctor fax stuff directly to me so I have it in hand rather than hoping the lab gets it.

Feel free to tell the obnoxious people to leave:-)


Anonymous said...

Saw results are back, good news.
Thanks Trevy for keeping everyone on their toes....

You need to cut obnoxious (love the word!) people out of your life as much as possible, they are a negative energy source and do none of you any good.
It's hard but i'm spending less and less time with those that showed their true (negative) colours through our nightmare year.

kt x

Mrs. M said...

Ohhhh! He is delicious and adorable! I love that he told them in no certain terms, Buh bye! And then that he was so cute and polite and again to the point. He is hilarious!

My gawd....people can be so heartless. Usually ones that are completely self absorbed and have never experience adversity in their lives. It's hard not to become really bitter in the face of that schmack. Good for you for repressing the urge to send those texts...although wouldn't it be really fun to just say/do everything we think one day? Not the fall out....just the initial non filtered day. ~ I've been there too....kinda of a diff situation, but the attitude was the same. My brother had died very unexpectedly and a so called friend told me It's been 3 months...get over it. People can suck!
But then....then....there are people like you Danielle, who have a heart of gold, a fantastic sense of humor and a deep faith to get you through rough moments like conversations with insensitive hypocrites. Hang in there, Sweetie. You're awesome...and NEVER need to "get over it"
PS:I completely agree with the anonymous KT!