life is hard, and i am thankful

I don't, not for a minute, regret adopting Zoe. But this parenting thing? It would be hard even if I didn't have autoimmune issues that can cause pain in my joints and damage to my bones. It was hard before cerebral palsy was added into the mix. It's been even harder since that and then epilepsy was added.

Some days, it's crushing.

Some days, I plop the kids in front of the TV in the family room during Zoe's nap and curl up in my bed with the TV there set to The West Wing on Netflix.

Most days, though, we still dream together about adopting a sibling pair with one or both children HIV+, likely from India or a new program in South Africa. As crazy as that sounds, those dreams aren't crushing. Because if God allows that or if He doesn't, our aim isn't that our lives be comfortable; it's that we lay down our lives for Him, pouring out His grace and love in ways that are hard but that draw us near to God as He shapes us more and more into the likeness of His Son.

Today, He's doing that as I wait to hear back from Robbie's neurologist. No, he hasn't had another seizure, as far as we know, but he's gone from being fully potty trained to having frequent bowel accidents.

I. am. sick. of. the. poo.

(In underwear, that is. I don't love it but I can handle it in diapers, and I realize we'll be walking that road for quite some time with Little Miss Zo-Zo.)

This is likely something with a neurological basis. And I hate it. He could be having very short seizures that we don't notice and losing bowel control then. This could be something else, of which the seizure and the accidents are each symptoms of something else.

I told a friend earlier today that I wasn't anxious. And I'm not. (God's got this.) I also confessed that I was concerned that sharing this would tempt others to sin by being anxious on our behalf. Please, don't go there.

This is hard, yes. But we're also thankful...
...that we have three precious little ones.
...that we have two dear friends who came over yesterday to help Jocelyn clean and organize her room (no small task!) and help me paint the family room (because color on the walls is almost as good as antidepressants for my mood).
...that Zoe slept in until 11:20 am this morning.
...that Robbie makes us laugh, like when he told me yesterday, "Mommy, I don't know how this happens. My underwear is clean, and then it's just raining poo! The poo, it rains! But it's okay, right?"
...that my big girl and I have figured out plans for her big birthday party with school friends.
...that my husband has realized that he loves to cook and has gotten really good at it.
...that selling off items on Craigslist has made our house less cluttered and easier to clean and has enabled us to buy a few items that I had been wanting to turn our bedroom into more of a haven for us.
...that our high school babysitter is comfortable with administering Robbie's meds if he has a seizure on her watch.
...that God is still good and still reliable, no matter what our circumstances are.

UPDATE: And we're thankful that Robbie's accidents are nothing new but rather just a characteristic of his epilepsy. Yep, his brain is having surges of electrical activity - which is what a seizure is - that are making him lose control of his bowel movements. We're starting seizure meds (Keppra) this evening, something that I find relieving and terrifying all at the same time.

~ + ~

Finally, I can't leave off one major piece of news that is full of thanksgiving: Emi Jane is home! Our friend Georgeanna is the one who first considered adopting Zoe, realized that wasn't the right plan for her family, and contacted us about her need. (See those links for the story in her words!) The path to consider Zoe's adoption led us to our daughter and left them with a homestudy ready for the adoption of a child with special needs from Taiwan... and Emi needed a family.

Here's a picture of the four of us together at the airport this past Friday:

photo by Emma Emery Photography {Facebook and blog}

And here's the video of their story:

Thanks be to God.

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.