Saturday, February 12, 2011

In Which We Start Over Again And Connor Teaches Me A Lesson

 My scruffy haired little boy had a good day today.
He definitely needs a haircut, though!  So that's probably on our list for tomorrow.  Since we had rainy weather today he and I spent some quality indoor time together this morning; we read stories, played in his swing and in the bathtub, made music together, and had some cuddly time too.  Then he snuggled down, signed "Mommy" and grabbed my hand.  He took a little nap in his swing while I sang old family songs and gently rocked him. 

If I loved this kid any more I think it would kill me.

He's on Ativan again, which is unfortunate.  He didn't have any seizures today, but it seems like lately that's been the exception and not the norm.

One of the things we discovered at the clinic yesterday is that he's probably not been having febrile seizures.  Connor's autonomic nervous system is having such a difficult time right now that we can't rely on any auxiliary (i.e. forehead, armpit or ear) temperatures anymore.  They don't match up with his internal temperature.  So while we might get a reading of over 100 degrees on his forehead and under his arms, a rectal temperature will come out his normal 97.4 degrees (he runs cool). 

What that means is that instead of febrile seizures, Connor is probably having cluster seizures and the "fevers" we've been seeing are a result of his autonomic nervous system going haywire.  

So that leaves us with two conclusions.  The first is that since Connor won't tolerate an oral thermometer, from now on we have to take his temperature rectally.  Glorious.  The second conclusion is that once again, Connor's seizures are uncontrolled and we'll need to start looking at an adjustment of treatment. 

Perhaps even more disturbing is the fact that Connor has started twitching slightly every few minutes.  I hadn't even noticed because the onset of this was so gradual, but the doctors pointed it out.  Though we'd have to do another EEG to be sure, they think that his brain is probably misfiring every couple of minutes and so he's having what they term "microseizures."  These are new and suggest that the medication's effectiveness is continuing to deteriorate.  Needless to say I'm sad and worried about this turn of events.  

I have confidence that someday-- hopefully soon-- we'll figure out the right course of treatment and Connor will be able to enjoy life seizure free.  And I take a lesson in patience and optimism every day from my son, who takes his seizures in stride and only gets frustrated with them when they cut into his play time.  Otherwise once the side effects of the seizure wear off he simply smiles and gets back to whatever activity he was engaged in before. 

With him for an example, how can I do anything but pick myself back up from this latest heartbreak and dive back into my own most important activity-- making sure that my little boy is as healthy and satisfied as possible?  He deserves nothing less. 

And on the good days-- days like this one-- when he's giggly and smiley and energetic, I want to spend every precious second making him happy.

So we'll go back to the drawing board, talk with his neurologist and start looking at other solutions.  In the meantime I wouldn't mind a few more lovely days like this one.  It didn't matter that it was rainy and gloomy outside; my very own ray of sunshine held my hand for hours and wouldn't let go.



Em said...

Daily reader, but near-never commenter. I just wanted to say that this post is lovely, that I have you guys in my thoughts, and that we're so lucky to have awesome kids. :)

Bronx Cataldo's said...

You know we have the same issue with Finnian in order to get a correct temp on him we have to do a rectal temp. When we are in the hospital we have them write on his chart that if his temp is ranging at 100+ from his arm pit a rectal temp must be taken before any meds are given. THen they hate that they have to figure out how much infant tylenol he has to be given as he cannot have regular tylenol as it contains sugar. I would just stick with rectal temps thats what we do

littleterr said...

We love you, Jess. Hang in there.

Rita said...

I'm so sorry Conner is having problems with the seizures again. I think you're right about him being the epicenter of cuteness though!
Your family is in my prayers.

Niksmom said...

I so admire your grace in the face of this difficult situation. Don't worry, I'm a SN mama, too, so I don't think you're a saint. Just an awesome and loving mother.

Your words today gave me some lightness of my own heavy spirit as we've been struggling with our own set of enormous challenges. I've been mired in the gloom. Your words remind me that I need to focus on the sunshine while it's here and let it be ok that my days don't look the way I expected they would or should.

I don't comment a lot but wanted to thank you for this post and tell you that I keep you, Connor and Jer in my prayers.

Julia said...

Jess, I'm sure that you will have *many* more beautiful days like that one. Through you, that ray of sunshine reaches all of us.

Roxanne said...

Also a daily reader but never commenter...

Thank you for this beautiful post and for reminding all of us to enjoy those intimate moments with friends and family. Thinking about you and your precious family.

Wherever HE Leads We'll Go said...

Love those pictures! Sounds like a great day! Amazing what our kids teach us, isn't it? Praying that you are able to find that perfect combination of meds to keep those seizures at bay.

ali said...

Time to de-lurk. I discovered your blog while reading hopeful parents a few months ago (I'm a pediatric OT, so I'm pretty hooked on all sites "special needs")

Conner (and his parents) is amazing. Your gift of writing and bearing witness to the daily ins and outs of family life is astounding. It's all I can do to keep my eyes open past 8pm most nights. You not only do that, but blog to tell about it.

Thank you.

Jess said...

Thanks so much, everybody.

Emthe said...

Just kinda flitted through my head, don't know if Connor's hearing aids are a bitch to remove and replace, or even if it would work at all, but what about those thermometers that go in your ear? The kind school nurses favor? Are they accurate enough, 'cause you might get less of a fight with that kind.

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