3.09.2011

lots a lipsmacking

Grams and I noticed several lip smacking spells last Friday. 


We agreed that it reminded us too much of this clip from ages ago.  When Trevy's Infantile Spasms were first starting to boil to the surface again.     





I didn't notice any on Saturday.  


But Sunday was lip smacking central.  I'd forgotten to mention my seizure suspicions to Jonathan.  I think I was half hoping it was in my crazy head.  With subtle seizures this is an easy game to play.  I was playing with all my might.  And singing my little heart out (we were in church) when I felt insistent tapping on my shoulder.  Jonathan.  Trevy in his arms.  Spacey.  Lip Smacky.  


I'm starting to worry


Jonathan's face matched his words.  


Game over.  


Cause daddy saw it too.  No more pretending I don't notice.  Or that I'm crazy and imagining things.  So I emailed Dr. Neuro to order labs.  Hoping that an increase in meds'll work.  Although we're still waiting for a Hematology appointment to determine if Dilantin is messing with Trevy's platelets or if the fluctuating levels are Mononucleosis after shocks.  Which sucks too.  Because Dr. Neuro won't go up on Dilantin until we know.  And I haven't pushed for the Hema appointment because I hadn't been noticing a lot of seizure activity lately.  


Until last Friday. 


And Sunday.  


And again on Monday.  Tuesday.  And today.  


All the same.  Several times a day.  Lasting for up to 10 minutes.  Lip smacking.  Repetitive rubbing his hands.  Space-y.  Loss of appetite.  Clingy and cranky.  Just not himself - his teachers and therapists describe.  Ocassionally the little involuntary frowny face.  The one he used to make with his spasms.  Over the past year and half we've randomly been haunted by the ghost of IS.  Frowny face here.  Mild myoclonic jerk there.       


And all I can think is crapCrapCrap.  And other colorful language that for the sake of my mother I won't publish here. 


It totally kills my ability to concentrate.  Even pounding out this post is taking much too long.  And I'm ready to delete the whole thing with every other sentence.   


Maybe it doesn't effect you this way.  But it does me.  Seizures...subtle or otherwise...suck every ounce of everything right outta me.  I swear I can feel my energy gush out my toes.  I can't think.  Focus is out the window.  I can't make much needed phone calls.  Or grade Toby's school work.  I can't bread the pork chops or get other dinner prep done.  I can't put the dishes away or do another load of laundry.  I can't snuggle Toby and Bristel who are begging me to watch a movie with them during rest time.   Jonathan can just forget about anything even remotely resembling romance. Everything just stops.  Cause I can't function.   I can't find Peace.  I can't find Joy.  I can't find Hope. 


All I can do is think about seizures for awhile.  


And what they've done to my child.  And what they're doing to him.  


And how in spite of all the beauty that he is...my heart is shattered.  And I just want to heal him.  Because holding him isn't enough.



Also...I think I'm still suffering through a crappy evaluation hang-over.  

12 comments:

Anonymous said...

Not sure what to say - tears in my eyes.

I totally get the 'energy gushing out your toes' feeling, anytime since surgery when I've even thought i maybe saw a hint of something seizure-like the same has happened to me.

I really really hope that some med adjustments can sort this.

hugs, kt x

PS how cute is he though, then & now :)

happy's mommy said...

First of all, kt, xoxo. I just love you!

I always have conflicted emotions about sharing the guts of IS life. Because I hate feeling responsible for draining others with my "bleh" stuff. But I also want to share Trevy's story transparently too. Also...it's somewhat cathartic for me to let my emotions loose and then read through all the supportive comments. ;)

Anyway.

He woke from his nap and has been so sweet. Other than messing with the dog, anyway. He loves to torment the dog. But he's sweet and happy...and sometimes that's enough. Sometimes.

...danielle

Kelly O'Melia said...

Danielle,

You have put my experience of life with seizures into words for the very fist time. I was able to identify with every last feeling and emotion you detailed in this post.

It really does suck everything out of you and causes me to put the rest of my life on hold. I've often wondered out loud if I'm supposed to just accept seizures as normal and move on? But how could I when everything in my being screams no!

So sorry you've been seeing these strange episodes.

happy's mommy said...

Oh Kelly...I've wondered the same. And have blamed myself for not having enough Faith. Like if I just Trusted hard enough...there would be no pain. But that's not the promise. The promise is that no pain wait in Heaven. But here. Sometimes it swallows me whole.

In some ways it's harder to see now. In part because he's not having them daily so my heart isn't hardened. And in part because we went as far as we could to rescue him...and it wasn't enough.

But yet without his surgery he wouldn't be sitting at the island in the kitchen eating "ohgur" (yogurt) by himself. And intermittenly chatting with his sister.

There is so much to celebrate too.

It's always this blend of beauty and profound grief. I just pray that someday I learn how to live with both...

...danielle

Andi S said...

Oh, I am so there with you. Emma started again just over a week or so ago. Drop seizures, over and over, not eating, extra quiet. We want to take her off the Vig because of the vision issues. The Topamax if mostly maxed. If we raise it anymore, we run the risk of the anorexia side effect. We tried to increase the Lamictal before but she has such a rage problem. So we tried to slightly increase the Lamictal. The drops are less, but still bad, the eating has gotten better, she's more alert, but you can tell she's got the grumpies. So we're going to increase the Vig and hopefully we see improvement....or we have to start her on a 4th med.

You are definitely not alone! Vent, PLEASE! I feel like I can't on FB cuz then I'm just complaining all the time.

{{hugs}}

Sophie's Story by Elaine said...

No words...just love.

Margo said...

Oh.
My heart and stomach sank.
Our situations are so different yet I get that sinking feeling and how consuming it is.
Could it be because he's been sick? And once his system is back up and immunity ok...they'll go away? Now, isn't that a lovely, little nieve dream? I know.
Sked the appts. Hold your boy and your breath and your hubby's hand...and it's okay to cry and swear. It's ok.
Be thinking of you Danielle.
Hugs through the wire,
Margo

Holli said...

You said it all...


Love ya, D.

lisa said...

Everything you describe is what its like to be a seizure parent. Its all consuming and so very heartbreaking. I'm so sorry you are in this place.

I have done the exact same thing...played the denial game that only stopped when Michael saw them too.

Love to you guys.

blogzilly said...

This is 21 pounds of suck in a 3 pound bag.

What the hell is it with Infantile Spasms? Regardless of if they go away or come back, I have only seen a very small handful of real success stories in our club. And by success I don't just mean being seizure free, although I know that would mean a lot to you, D, and to Elaine and Holli and Sinead and a lot of other people, ESPECIALLY the surgery parents.

But Bennett's seizures haven't come back, but I don't consider him a success story. His mind was FRAKKED by those things and the tumor and all the shit that went along with it. He bites his arms until there are welts and beats his head and slaps his mom silly because he can't talk.

Ever notice a lack of video of Bennett lately? The gap is getting wider and wider and wider and wider. I don't know if he even CAN catch up.

We got lucky (for NOW) in that his seizures had a pretty clear focal point...but do you HEAR that...here I am, a grown man, with a straight face, saying my kid is LUCKY to have had a Grade II tumor in his head that could very well return and kill him at some point in his life. What kind of F-d up thinking is THAT!?!

But tumor aside, Autism (?!?!) aside, everything aside, these seizures, these Em-Effin' seizures for what some would consider a relatively short period of time, around 6-7 months, did a MAJOR number on his brain. MAJOR.

AND Trevor's. AND Sophie's. AND Emma's. AND Austin's. And Broc. AND ON. AND ON. AND ON.

SO WHY ISN'T THIS A BIGGER DEAL IN THE WORLD?

I just don't get it D. I just don't.

Sometimes I just feel like driving my car into a wall I get so pissed.

OK, blog hijack over.

For now.

I'm sorry Trevor is going through this. It fills me with a rage I can't begin to explain. Just like all the other kids. Why not sadness? Just rage. I can't figure it out.

happy's mommy said...

Andi...I hate playing the med game. :(

Elaine...ditto

Margo, Holli and Lisa...thanks, girls. Love you.

Kenly...you've said it before and it resonates in my heart every time. Although I often feel self serving saying it. But Infantile Spasms has to be one of the most devastating childhood disorders. Is there even a word really? Disorder. Disease. Nothing fits. You've been so sappy yourself lately...I almost forbade you from reading this post. :) It's hard to not feel bitter and defeated. And it's certainly beyond bizarre to live in this place where you know you're "lucky". But really? Not. I was talking to a friend today and she said that it must be what it's like living with nightmares. That's how she describes us. And I like it. How can your heart ever really come to terms with living in the nightmare. We don't have the luxury of worrying that our children "might" fall prey to some horrible illness we google stumbled on to. They already have. And yet...we're lucky in many ways too. It's just too bizarre to even fully express.

Anyway. Trevy is sweet and happy right now...and that helps a lot. I'm back in the place (for this particular moment) where his happiness means the most to me. Everything else is secondary. (for this particular moment)

Love you...

...danielle

Sinead said...

I'm always sorry to see our little kids having seizures. I will honestly say, I still see Emma as a success story cause seizures on one day a month and small developmental gains are such a gift compared to where we were. I have had my share of disappointment and I have cried in despair too and I cry for my other Mom friends who find themselves staring seizures in the face after taking radical steps to bid them goodbye. I hope, hope, hope for better days for Trevy.