FAQs about our new arrival in seizure-land

Do you want to talk about it?
Yes. It's hard to talk about it, but yes, I really do want to do so. Talking helps.

And, honestly, right now it's front and center on my mind and heart, so it's hard for me to have a conversation without talking about all that we're trying to process right now.

How are you doing?
I don't know.

No, I'm not just saying that to dismiss you. I really don't know. I'm just numbly taking the next steps we need to take (and occasionally bawling my eyes out when I'm alone in the car), thankful that God is in control of it all.

So it's good news that Robbie will grow out of these seizures, right?
Right. He has a 70% chance at outgrowing them around puberty. (Yes, my friends, I'm the only mom of a boy who is really, really, really looking forward to puberty now.)

The answer above is my standard one. But the one I don't say out loud but just think in my head? Here's that answer: This "good news" doesn't feel so good when it means that we're looking at a decade of seizures.

What can we be praying for?

• For the tests this week and next to go smoothly and provide clear next steps for treatment. 
• For me to be able to sleep instead of sitting up all night, watching the video monitor to see if he has another seizure and for my health, since my chronic conditions usually do better with lots of sleep and low stress. Ahem. So, basically, in opposite conditions than the ones we're rocking right now.
• For Jocelyn not to feel lost in all the attention paid to her siblings' special needs. 
• For Zoe's therapy needs not to get set aside as we focus on what's going on with Robbie.
• For Robbie to continue to be seizure-free, except perhaps during the 48-hour EEG on December 12-14 (during which a seizure would be helpful so we can capture exactly what's going on in his brain when he seizes), and for him to continue to sweetly trust us through all the tests.
• For us to find a more affordable option for a seizure alarm, which is a thing for Robbie's bed that will alert us to a seizure and help us sleep, but it isn't typically covered by insurance. At $700, it's a bit steep, even if we can get the $70 discount we think they'll offer... but if that's the cost to be able to sleep again, we'll figure out how to pay it, by golly.
• For Lee and I to truly connect as husband and wife instead of simply going into survival mode (which is where our marriage lived for the first two months after we brought Zoe home and, let's be honest, that period of time was downright ugly for our relationship, so we'd rather not go there again). 

What do you need?

• Sleep.
• Tips on where to find cute pajamas because nighttime seizures = nighttime visits to the hospital. I can't make that scenario any better, but I can make myself look cuter in it, which is almost the same thing. (If it helps in giving tips, I like loose pj pants and matching tops - like these or these but not like these since I don't dig button-downs unless they have an obnoxiously fun print like these.) I've been wearing the same ratty pjs for a decade, so I have no clue where to start in looking for new ones that don't cost an arm and leg - tips?
• Hugs.
• Coffee. (My current loves are Starbucks Skinny Peppermint Mochas, Sola Shakes, and Jubala Almond Lattes. Who's up for a coffee date?)
• More hugs.
• Reminders of Bible verses that assure me of God's plan and purpose in all things and His love for Robbie and me.
• Texts and calls and messages and emails and comments to let me know that you care. (I cannot tell you how much those helps while we were in the hospital.)
• Meals, if that's how you like to love folks, since no sleep = no cooking initiative and a $700 seizure monitor on my wish list = no spare moola for takeout.
• And sleep.

Any other questions? Shoot. I'll answer later.

still true.

I didn't want to be discharged from the hospital a week ago.

As long as we were in the hospital, I had someone with more training than me there to respond if my boy had another seizure. Out of the hospital, I had butt valium.

Okay, so it's called diazepam, but it's technically Valium, and you administer it rectally to stop seizures lasting longer than five minutes (waiting shorter ones out), so we call it butt valium around here. What can I say? We're a fancy and refined people.

We left the hospital knowing that another seizure was 50/50. I didn't like those odds, but I knew the odds would move in our favor every day until a seizure-free year from now when his odds would go back to the typical 1-2% of any other kid. As I repeated that to encouraging friends over the past week and heard stories of one-time seizures that never happened again among family and friends, my spirits were buoyed.

We'd get through this. We'd be okay. 

But now I know that the next seizure is no longer "if" but "when." The title of Tuesday morning's blog post was "Will he have another seizure? We just don't know;" by Tuesday afternoon, the answer changed to "yes, yes, he will." For the first time today, I had to tell a stranger - the WakeMed nurse calling for Robbie's MRI next week - that my boy has epilepsy. And my voice broke as I said the word. As I explained to her that we know the drill since this is our third sedated MRI for a child, my eyes welled with tears because, if I'm completely transparent with you, it's not okay with me that I've become so comfortable with the sedated MRI procedure.

But you know what?

We'll get through this. We'll be okay.

Not because we're great. We're not.

Not because we have answers. We still don't really.

Not because seizure meds - if they're necessary - are good and precise and easy to figure out. They aren't.

Not because we like our doctors a lot. Even though we do.

It's felt like a terrible, horrible, no good, very bad week. For example? In no less than eighteen hours, I came down with a nasty head cold, my boy was diagnosed with epilepsy, and I was hit with a vicious stomach bug. I'm still reeling from all that (and running a fever each afternoon).

But the sweet thing about knowing Jesus is that even when I feel terrible, I can cling to someone who is wonderful. Even when life seems cloaked in horrible, we know who is still in control and has chosen this to be woven into His story of ultimate goodness in our lives.

In my last blog post before the word epilepsy was added to my boy's medical record, I included this favorite verse of mine: "And my God will supply every need of yours according to his riches in glory in Christ Jesus." {Philippians 4:19}

Because that's still true now, we'll get through this. We'll be okay.

Well, now we're in the land of seizure disorders.

In the past few days, whenever anyone has asked how they can pray for us, I've asked one thing: please pray that if anything abnormal is going on in Robbie's brain, it will show up on the EEG. Knowing the test can be normal even on kids with seizure disorders, I didn't want to get false normal results.

So, the EEG was today.

So, the EEG was abnormal.

I know that we are blessed that the results were clear. I'm just not feeling very blessed quite yet.

Because while we're thankful for clarity in tests so far, I hate that my boy has a preliminary diagnosis: Benign Childhood Epilepsy. Benign, meaning that it's not the result of a tumor or anything like that. Childhood, meaning there's a good chance he'll grow out of it. And Epilepsy, meaning that our boy's brainwaves go a little off-kilter from time to time and a seizure results.

In other words, he will have another seizure.

The good news is that most kids with this type of epilepsy outgrow it, and this kind of seizure is usually limited to sleeping hours, primarily the first three hours of sleep, which means we don't have to feel constantly on guard that the next one could come at any minute.

(On that note, any recommendations of 10pm TV shows? I usually steer clear of those to try to go to bed early, but Robbie is usually asleep at 8pm, which means one of us will be staying up until at least 11pm to monitor him each night... which means more watching of 10pm shows, so hit me with your recommendations!)

We're still rolling with the butt valium as our only med, only to be administered if a seizure occurs. We're probably going to add a daily drug regimen once we nail down what's happening, but first we get a sedated MRI next week and an ambulatory EEG the following week. (That last one is the same sort of thing we did today, with 25 electrodes on his head to monitor brain activity, except all those electrodes will stay on for 48 hours of monitoring.)

So we wait. And we learn more. And we trust God.

This is our new normal.

So, will he have another seizure? We just don't know.

This is the final post in my series about the emotional Thanksgiving we had. If you missed the others, they're: (1) the worst 12 minutes of my life, (2) the longest seven hours of waiting, (3) the best morning, and (4) a Thanksgiving evening at home, sweet home. Now read on for the rest of the story, as it stands right now...

We left the hospital without answers.

As hard as it was to know all I knew during his seizure, my training helped me with sweet peace about leaving without knowing the cause. You see, I already knew enough about seizures to know that we'd be leaving without answers, especially once the CT scan came back normal.

Seizures are tricky. If they can get a child to have one while hooked up to machines, docs can pinpoint what the cause is. If not, you're left without knowing what happened or if it will happen again.

Today at 12:30pm, we'll get all hooked up for an EEG. If you remember, Zoe shared her EEG experience on the blog a few months ago. Simply put, it's not fun. Even more annoying, it's not precise. In about half of cases, a seizure disorder can exist without being caught on the EEG since an EEG is just a snapshot of brain waves during the monitoring time, which will be relatively brief today.

(Think about it like a family picture. Does your family always look like that? No, that's just one moment's representation of your family. Same thing here: the EEG will just be a representation of what's happening with our little man's brainwaves.)

Our prayer is that the EEG will show something if he has a seizure disorder and that it won't show anything if he doesn't. Would you join us in praying that?

Here's the thing: in cases like Robbie's, there's a 50% chance that he'll never have another seizure. And there's a 50% chance that he will. Seizure meds are not something you want to consider unless the diagnosis is clear, so right now all we have is butt valium. (Well, it's called diazepam, but Valium is the brand name for that drug and it comes in syringe to administer rectally since it's unsafe to put anything in a person's mouth during a seizure... so, since we're classy, we call it butt valium.) If he has a seizure again and it lasts more than five minutes like it did last week and emergency responders haven't arrived, then we give the butt valium.

Sweet Jesus, please. We don't want to have to go there.

But we're thankful You're with us if we do: "And my God will supply every need of yours according to his riches in glory in Christ Jesus." {Philippians 4:19}

Thankfully, if he makes if a year without another seizure, we drop back to the typical odds of a 1-2% chance of a seizure, which is the same chance that any other typical kiddo has. As we get further and further from this seizure and closer and closer to the year mark, the odds of having another one will keep dropping.

Until we know something more, I went to my safe zone of plans. Knowing that we need to equip Robbie's Sunday school teachers and other occasional caregivers, I retreated to my happy place of fonts and cardstock and stickers and lamination.

Meet "Robbie's Seizure Emergency Plan."

One copy is safety pinned to his backpack, and I have one copy for every person who cares for him.

I'm trying really hard not to be bothered by the typos (I put the wrong date for his seizure - off by one day - and the wrong number for Lee - which I fixed with a new strip of info and a second run through the laminator - and made one other typo.), but the point isn't perfection but practicality. His teachers each received the info really well on Sunday, which was great. We have three more groups of teachers to give it to (his every other week teachers at 9:30 church, his regular Sunday night teachers since they were out this week, and his mid-week Bible study teachers who we won't see until after we start up again after Christmas), but we know all of them personally, so I know it'll go smoothly.

The last part is as much for me as it is for his teachers.

Oh, and remember how thankful I was that my little guy woke up and told the nurses all about different kinds of lizards? Well, we took advantage of one Black Friday sale.

Who knew reptiles would be 50% off?

a Thanksgiving evening at home, sweet home

Today you get to the discharge part of our Thanksgiving Day hospital adventure. This is the fourth post, with the story beginning in the post the worst 12 minutes and continuing with the longest seven hours of waiting and the best morning... 

After Kiki's visit, the nurse who check on us earlier - our friend's friend - came to get us to move to the pediatric floor. Getting wheeled on a bed through the hospital? That is pure coolness for a three-year-old boy. I don't have a picture to share, but his ear-to-ear grin is burned in my memory.

The walk was sweetness to me too. Claudia was just helping to transport us, so when she asked about our night, she was asking as a friend not as a medical professional needing to gather clinical information. Other than a earlier phone conversation with Blake, our children's pastor, I hadn't gotten to  just talk about the incident and aftermath without editing out details that were unnecessary to Robbie's care. It was nice to talk it out while we walked.

We settled in. I decided it was fine to document my rockin' cool pajama pants with a picture on Facebook. It had seemed really important to me during Robbie's seizure to have jeans to change into. Angie didn't question that, just got my jeans for me and added them to our hospital bag. (In case you're wondering, yes, I had changed into pajama pants while Angie was still hanging out at the house that evening. We're good friends like that.) After we got to the hospital and were heading to get the CT scan, I said something to Lee about needing to change into my jeans because we were out in public. A nurse heard me and said, "Honey, nobody cares what you're wearing here." 

She was right. I stayed in the cartoony fleece. 

We figured out the new room's TV and the DVD rental system and the menu (WakeMed, I must say that you have a looooooong way to go before you're at the Rex food level) and waited for the neurologist. I called to check in with Lee, who was with sweet friends of ours who opened their home to him and the girls so they could still have a typical Thanksgiving Day.

(Other friends also sweetly offered to host them too. We are very, very blessed!)

As Karen posted pictures of them on Facebook, I knew they were being cared for well. I can't explain it, but knowing that the rest of my family was being fed and loved helped me focus on my boy and ministered to my heart in a precious way. Such grace.

The neurologist came, talked through plans and future considerations (which I'll post more about tomorrow), turned down Robbie's offer to wear the heart sensors so Robbie didn't have to, and chuckled when Robbie decided we were boring and shut his eyes for another nap. 

With no EEG techs at the hospital because of the holiday, we opted to just wait until the next week to do that at the neurologist's office. Which meant...

DISCHARGE!

As we waited to find out when we would leave, Robbie woke up and said, "Mommy, I think maybe some other boy got sick, and we should get to leave." In other words, he didn't remember the seizure - which is typical - so I must have made a big mistake by bringing us to the hospital. 

Oh, sweet boy. If only.

When the time came to leave, Jocelyn stayed with our friends, and Lee and Zoe came to get us, since my car was at home given that I rode in the ambulance on Wednesday. Thankfully, the Dormans sent Lee with leftovers, so I ate a plate as soon as we got to the car. (Seriously, Wake Med food = not exciting!) We pulled out around 3 or 4 in the afternoon, stopping by the nearest open pharmacy to pick up the prescription we needed in case Robbie had a repeat performance. 

I also got some special medicine for Mama.

That evening, I needed a drive to clear my head, so I went to pick up Jocelyn even though our friends offered to bring her to our house. I stayed at their house and chatted for a while, and for the first time that day, felt like it was a normal Thanksgiving. 

Jocelyn, who can get anxious about emergencies, enjoyed herself too much that day to be worried for her brother, and she skipped all the way to the car. More sweet grace. Begging for more sweet tea, we swung through the McDonald's drive through for her (and a Diet Coke for me!). 

We arrived home shortly after a friend had come by to see our boy and bring him presents, and she had delicious Thanksgiving leftovers with her too. (Leftovers are my favorite part of Thanksgiving!) As we put Robbie to bed with Zoe's monitor re-located to his room, I was too tired to stay up to watch him like I intended to. 

In the morning, though, he was himself, climbing into our bed at 5am and snuggling and smiling and asking for juice. 

Oh, so thankful!

My final post in this story will be tomorrow... what do we do now? (In case you don't read that full post before our EEG, that's at 12:30 tomorrow. Please pray!)