on being wrong, starting a new year, and eschewing medication for now

on being wrong

On December 13, I said that Robbie had another seizure. I had described it to the neurologist, who said it sounded like a textbook partial seizure. We were all pleased to know that the data would show up on the EEG.

Except it didn't.

Because it turns out that my boy is just a bit quirky in the middle of the night, and those quirks look a whole lot like seizures. Yes, the first seizure was legit. It was a terrifying grand mal seizure. But it's the only seizure he's had so far.

And, yes, the abnormalities in both the first EEG and the second long one indicate that he has epilepsy. Unfortunately, we're not wrong about that. 

on starting a new year

We've loved 2012. God has given us far more than we expected or deserved this year. We have a new house after an unexpectedly fast sale, a new child after a miraculously fast international adoption, a new start in public schools after a crazy assignment process, and a handful of new diagnoses in our family as a result of that adoption and that scary seizure in November... all of which were unexpected.

As exciting as 2012 was, I've never been so thankful for a new - and hopefully boring - year. The last one just about did me in.

on eschewing medication for now

The biggest question about Robbie's epilepsy has been about medication. Well, we are taking the doctor's advice and waiting on that for now. While we're about 90% sure about this epilepsy diagnosis and are closely monitoring him for another seizure, we're being cautious about medicine, because the side effects of seizure meds can be more problematic than the occasional seizure.

So we wait.

After the next seizure, the plan is to go ahead and start administering the prescription that we've already filled and that sits in our medicine bin waiting to be used. For now, we're surprisingly at peace about the same waiting that had us on edge only a few weeks ago.

This eschewing medication thing isn't just about Robbie, though. I'm currently in remission from rheumatoid arthritis, thanks to Remicade. The drug requires thousands of dollars of medicine every seven weeks, administered via IV over a period of three hours and necessitating a scramble for childcare each time. I'm sick of it.

That said, it's been a wonderful drug for me. I wouldn't just stop taking it out of weariness. However, I had to delay my IV for two weeks due to illness, and I've realized that I would usually be in pain by now. I'm not. Depending on the study you consider, 20% to 55% of patients who achieve remission with Remicade can stay in remission for at least a year without it.

So we're waiting to see what happens without drugs.

My doc doesn't completely love this idea. We know Remicade works for me. We also know that stopping and restarting Remicade often doesn't work, as my body will be likely to reject it if we try it again. However, my doc respects our decision. Furthermore, if I do need to stay on biologic medication, I would prefer to switch to one that I can inject myself at home.

So that's the plan for now. Let's see what God has in store for us in 2013!

today removal of the EEG equipment, in pictures

yesterday at naptime

today in the neurology office waiting room

back in the EEG suite as they removed all 25 electrodes

Now? We wait for results, and then we'll use those to come up with a treatment plan with the doc, who we love and who is also Zoe's neurologist.

And we let Robbie ran and play, untethered to wires. He was a trooper through the 48 hours, but he is obviously relieved to be free again.

on surviving another seizure and being hooked up to the EEG for 48 hours

Well, we survived another seizure and are thankful that the EEG should have captured what happened in his brain during it. This one was much less scary, in part because we knew to expect it and in part because it was a different kind (a partial seizure rather than a generalized tonic clonic) and in part because it was shorter and stopped on its own (so no ER visit).

He'll still be wired up to the EEG through tomorrow, but he's tolerating it much better than expected. I think he would try to take it all off at night if he slept by himself, but I'm staying with him in bed, so he's resting well.

Now, let me backtrack and show you some shots from getting the EEG put on yesterday. I'll be posting some video later, at the request of friends whose kiddos don't handle EEGs well, so they can watch our little champ getting wired up like a pro in preparation for their own EEGs. For starters, here's the smiley little man who knows what's about to happen since we had a one-hour EEG two weeks ago.

Now he's watching Stuart Little on the TV. The chair in the background would later be occupied by another three-year-old boy getting suited up for his 48-hour EEG.

Now we're partway through. He had 24 electrodes taped to his head, with another two on his chest.

Here you can see all the wires going to the main machine. They unhooked them all from the device on the right and plugged them into a smaller pack that is about the size of a thick trade paperback book.

He got to choose his cap color for after all the wires were on.

In the middle of his forehead, you can see the crayon marks they start with. It took about 15 minutes or so to measure and mark up his head before they placed anything.

Then the guy wrapped Robs up with gauze and taped it well.

All the while, Robbie kept watching (and played sometimes with the toys in front of him).

Here's another angle.

Toward the end, he was exhausted from a rough night of sleep and tired of sitting for about an hour. Here's a big yawn.

To help with the two days he'd be hooked up, they wrapped all the wires too with tape and gauze. (That's not holding up super well, and Robbie gets tangled from time to time.)

He was bored at this point.

And tired.

And a bit fussy.

But nothing juice (and a trip to the treasure box for a new car toy) couldn't help.

Isn't he cute in his little cap?

Now we strap his little computer receiver thing to his back with a canvas backpack, and we jot down notes about daily activities in our bright yellow log, and we wait until tomorrow to go back and get it all taken off.

And I sleep in his racecar bed with him so he doesn't take it all off during the night.

Which has me still in my pajamas right now with no plans on changing before Zoe's occupational therapist comes here in an hour. 

Because I don't care. And she won't either. 

Thank goodness for in-home therapists.

the weirdest prayer request I've ever posted.

We're about to go to a friend's house to drop off Zoe and then to the neurologist's office to get 24 or 25 electrodes placed on Robbie's head.

Then they send us home for 48 hours.

I sure hope the tape and goo they use to secure each electrode is strong, because, well, he's a three-year-old boy.

We're rocking a button-down shirt (and will be sporting button-downs until the electrodes are off, since we can't pull things over his head), a new hair cut to help them find his scalp through his mess of hair, and a lizard on the chair who is back in his terrarium and who will not be joining us for the trip.

This EEG is all about getting more info about the electrical activity in his brain. During a seizure, you could say that the brain has an electrical storm that it expressed in the thrashing and lack of consciousness we saw three weeks ago. Which leads to my weird prayer request...

would you pray with us that Robbie would have a seizure 

during the 48-hour EEG? 

and that we, as parents, would handle it well?

We'll be throwing off his schedule - staying up late and maybe taking a long drive to look at Christmas lights one evening - to lower his seizure threshold. After three weeks of trying to prevent another seizure, we need to do the opposite in the next 48 hours. (To answer the obvious question, yes, this does give me the heebie jeebies.)

I hate asking you - and God - for this. But data is helpful. EEG data during a seizure would tell us and his doctor exactly what we need to know to treat his epilepsy.

So will you join us in asking God to say yes to this weird request?

Thanks.

hallelujah, all I have is Christ {reflections on worship, motherhood, epilepsy, cerebral palsy, adoption, and God's sovereignty}

This was originally posted on my family blog, Dinglefest, but I think it has a place over here too.

If we are late to church, I struggle with worship. Why? Because, given the order of our service, being late means I miss the music.

God draws me into worship through music.

This Sunday, we were on time.

I once was lost in darkest night
Yet thought I knew the way
The sin that promised joy and life
Had led me to the grave
I had no hope that You would own
A rebel to Your will
And if You had not loved me first
I would refuse You still

I've craved sin over the past few weeks. My instinct has been to tell God that He got it wrong. We were supposed to just have one child with special needs, I wanted to say to Him. We have been praying and seeking wisdom about the next child for our family, specifically the timing of another adoption and the degree of disability we'd be open to. I was broken as Robbie seized because I had come to think of special needs among my children as something I got to pick and choose.

But as I ran my hell-bound race
Indifferent to the cost
You looked upon my helpless state
And led me to the cross
And I beheld God's love displayed
You suffered in my place
You bore the wrath reserved for me
Now all I know is grace

In all the circumstances of that terrifying night, God didn't meet me with the wrath I deserved in return for my arrogance in thinking I controlled disability in our family. No, what He laid out for me that night was grace, pure grace.

Hallelujah! All I have is Christ
Hallelujah! Jesus is my life

When you're not sure if your boy will live the night, as I felt when I found mine choking on his vomit and smothering himself in his pillow pet, all you have is Christ. When you lift your boy, thrashing, out of his racecar bed, and lay him seizing on the floor, the only comfort you have as one... five... ten minutes pass is knowing Jesus and trusting Him with your life and that of the unresponsive boy on the floor.

Now, Lord, I would be Yours alone
And live so all might see
The strength to follow Your commands
Could never come from me
Oh Father, use my ransomed life
In any way You choose
And let my song forever be
My only boast is You

Yesterday, this is the verse that messed up all my makeup. "Oh Father, use my ransomed life / In any way You choose..."

Any way You choose.

As I sang those words, I knew they would be lies if I wasn't surrendering it all to God. I was forced to stop singing or to acknowledge that God has the right to use my ransomed life in any way He chooses... even if that means a decade mothering a child with epilepsy.

Indeed, if I have to watch my only son suffer through tests and seizures, who else should I turn to but the One who sent His only Son to earth in the incarnation we celebrate at Christmas, doing so with the full knowledge that He, the Father, would have to see His Son on the cross for my sin?

And let my song forever be / My only boast is You.

Hallelujah! All I have is Christ
Hallelujah! Jesus is my life