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!)

the best morning.

You might be lost in reading this post if you haven't read my last two. This is the third post in a series that began with the worst 12 minutes of my life and the longest seven hours of waiting.

As thankful as I was for "idiopathic," I was struck by one thought: for every parent of a child with any special need, they had a moment when they were formally ushered into that world. As I served these families as a teacher and disability ministry leader, I knew that this could be a fluke or this could be our moment when our reality changed.

As I thanked God for providing that insight, I prayed that for the former and pleaded that we wouldn't be facing the latter. As I asked for that, I knew He hadn't said yes to that plea for many families I love, and I knew He had purposes behind every no.

Knowing that, I still wanted the yes.

I waited. I clung to little glimpses of joy, as our sleeping Robbie hit the nurses when they used a catheter for a urine sample and pushed away the oxygen mask when they tried to reposition it. He wasn't awake, but he was responding.

This was a very, very, very good thing.

They wanted to move us to the pediatric floor, but all those rooms were full. So we stayed camped out in the ER. Around 3:30am, one of the nurses brought me a recliner and a blanket. I pushed the chair as close to his bed as I could, to hear and touch and see him and to guarantee that he would see me there as soon as he woke up.

Three hours later, I was crying again as a handsome little fellow woke up angry, not remembering the seizure and trying to tear out his IV and remove all of his tubes and sensors. When I told him that the IV had to stay (letting him remove the sensors because I knew we could easily put those back on), he glowered and shouted, "I want my daddy!" in hopes that Daddy would say yes to taking out the IV.

I have never been so happy to hear those words. It was Thanksgiving Day, in every sense of the word.

When I explained that Daddy was at home and opened my arms wide to him, he flung himself against my chest and snuggled in close. My tears fell on him once again, so thankful that my boy was himself again.

I called for the nurse and soaked in her smile when she saw how well he was doing. When she offered him apple juice, he sassed her. "No! I don't like apple juice, remember?!?" Usually, I would have made him ask nicely for something else, but this was a morning in which I chose to overlook a bit of bratty behavior. She and I just laughed as I told her grape juice would be better.

In between sips of juice, he told the nurse all about our recent visit to the pet store to see lizards. He explained the differences among leopard geckos and skinks and chameleons and bearded dragons. We set up Wild Kratts via Hulu Plus on Lee's work tablet. He convinced the nurse that the oxygen monitor wasn't actually necessary. He tried and failed to do the same with the IV. He showed off his smile and what he calls his "surprised face."

He cheered up considerably when Kiki the Giant Schnauzer came to visit. She and her owner have been coming every Wednesday and almost every holiday for the past five years, and she was the sweetest, most docile beast I've ever met. We watched her through the window until she made it to us, and he was too excited to speak when he finally got to pet her.

We waited to be transferred to a real room, but I no longer cared how long that would take. A friend's friend came on shift as an ER nurse and stopped by to check on us. Robbie ate his breakfast and mine, and then - having eaten too much - threw up again. (That also could have been a side effect of the meds they gave him.) Thankfully, Angie had packed spare underwear for him, we got a new hospital gown, and the nurse stripped and remade his bed.

And we kept waiting, knowing we lived in idiopathic land but also knowing that our biggest concern now was another seizure and not any neurological damage from lack of oxygen during the first one.

Grace.

Part four (discharge!) tomorrow, and then five (what now?) the day after!

the longest seven hours of waiting.

If you missed the first one in this series, you'll have to read this to find out how we got in the ambulance through the worst 12 minutes of my life...

Confession: It's still hard for me to walk into Robbie's room after what happened two days ago.

As the paramedics - who were some of the kindest people I've ever met. more grace. - worked on my unresponsive boy, they asked questions. I answered them as I was prepared to, falling back once again on my training.

They each at different times commented on how well I was doing. I answered with a small nod, not able to put together the words to explain that I was not doing well inside but that I was simply doing what I had been trained to do. My demeanor was no indicator of how I felt but was simply what I knew it needed to be for my boy to get the care he needed.

As the team of responders worked on my son, I reminded them at least a half dozen times that my daughters were still sleeping. I couldn't bear for Jocelyn to wake up and see what I was seeing and then have to leave her to work through that with someone else.

I was thankful when they picked up my boy and carried him through the house, equally relieved that we were getting closer to the hospital with every step and made more comfortable by all those people leaving his bedroom. As I walked down the hall, Angie stood waiting with my shoes and sweater. Both she and Lee had grabbed clothing items and toys and electronics and chargers, all the things we'd like to have in the hospital. (If we ever have to do this again - please, no, Jesus - I'd grab a pillow of my own and change of underwear too. Those were the only things I missed.)

Helpless, I watched them strap him on the stretcher. Helpless, I tried to smile back at Angie so she wouldn't worry, and then immediately realized how weak and worrisome my smile must have looked. Helpless, I hugged my husband and then climbed in the ambulance next to my boy. Helpless, I listened to them quickly discuss the risks and benefits of medicating him right away to stop the seizure or waiting until the hospital so that the doctors there could observe what was happening unmedicated, with a better chance of having immediate answers.

Helpless, I watched them medicate him.

I nodded as they named the hospital. As we rode, I knew that I was living that Bible verse that talks about being unable to pray and the Holy Spirit having to intercede in groans. (Just looked it up. It's Romans 8:26.) I knew I would feel comforted by intercessors with skin on, so I texted our pastor and posted this request on Facebook:

I tried to remember the name of our friend who is an pediatric ER nurse at Wake Med. I could only remember the first sound and that it was unusual, so I texted another friend - who is the niece of that nurse - to ask for the name so I could ask for her when we arrived. I peppered the paramedic with questions about the unfamiliar words I had heard them use, knowing that I would hear those words again and that I would want to be able to decipher doctor-speak later, particularly in the moments when medical professionals talk about your case in the same room as if you don't understand their lingo.

I couldn't do much, but I could learn every bit of that lingo so I could advocate for my tiny patient later.

The paramedic who rode in the back with us was fabulous. As soon as Robbie was stable, she turned her attention to me, answering my questions and offering me water and making sure I was holding up as well as possible, given the circumstances.

I don't know her name, but I'm going to try to figure it out so that I can thank her. She embodied grace in her care for me and understanding that I felt less helpless with each answer.

I was startled when we stopped, realizing that an ambulance can get to the hospital far faster than I thought possible.

I'm not sure how we got from the ambulance to our room in the ER. That part is a blur. Once in the room, we had nearly a dozen people - nurses and doctors and residents and the EMTs and us - gathered around our boy. Soon, Lee and a person from check-in joined us. I signed several papers, and right now I can only remember what one of them was for.

It didn't matter what the papers said. I would have signed anything away to make this night better.

They took blood to check for things like electrolyte imbalances or low blood sugar or vitamin deficiencies. I knew, from his diet that day and daily Flintstones chewable, that those tests would probably show nothing.

Someone explained that we'd be leaving soon for a CT scan, as I expected. I knew what that meant: we're looking for a tumor or other mass of some kind. CT scans can also check for brain injuries or traumas, but Robbie had been with us all day without any bumps to the head or other accidents.

I've never prayed and hoped so much for idiopathic in my life.

You see, idiopathic is a word to hate. It's the fancy term in the medical establishment that says, "We have no answers, but it doesn't look good to write 'hell if we know' on the chart, so we came up with a big long word to say that."

But when you know that the most likely answers that night are "idiopathic" or "tumor," you know which one you want for your boy.

We went down to imaging, my boy on a bed and finally limp as they moved him to the CT scan bed but not reacting as they strapped his head into place. As they did the scan and moved him back to the bed and turned to return to the ER room, the nurse pushing Robbie on his bed and us walking beside him, I knew more than I wanted to know.

Back in the ER room, we sat in chairs next to Robbie's bed, our heads resting on the side rails as Lee prayed. I explained to him all that I knew, letting him know that the results would give us our next steps. If all we had was "idiopathic," he should go home. Jocelyn would be brokenhearted in the morning to know that the trip to Grandma and Grandpa's house was off, and she would be eaten up with anxiety if she realized that something was so wrong with her best friend, her brother, that both Mommy and Daddy had to be in the hospital with him. I let him know that - barring a tumor and probably even if it was one - all I would do is wait for him to wake up, knowing that the drug given to him by the paramedics would keep him asleep until morning. One of us needed sleep and needed to be there for the girls.

In the morning, we would know if we were just concerned about another seizure in the future or if we were in the midst of a much more life-altering reality, all based on whether or not he was himself when he woke up.

The CT scan came back normal: no tumor. The bloodwork came back: nothing abnormal. We'd be admitted and wait for a neurology consult and probably an EEG and an MRI, not knowing the schedule since we were in the wee hours of Thanksgiving Day.

As the resident explained the results and we were thankfully in the land of idiopathic, I kept staring at the logo on his lab coat: NC Children's Hospital. I spent most waking moments in college working on the UNC Dance Marathon, a student-run philanthropy serving the families there. I remember seeking donations by explaining the unexpected realities facing the kids and their parents if they ended up in the excellent care of that hospital. I heard the parents share their stories, and I never, ever, ever thought I'd see that lab coat from the perspective of a parent and not a volunteer.

When we were alone again, Lee jokingly asked if I knew the winning lotto numbers, given how accurate my predictions had been so far. We hugged and kissed. He set me up with the chargers I didn't even know we had, making sure I had my phone and his work tablet to connect me to both the outside world and Netflix. He left in search of caffeine and chocolate for me, a sweet gesture that each of the nurses would comment on in the coming hours.

As he left, I settled into the uncertain wait with my friends Gus, Shawn, and Juliet and my Thanksgiving Day feast of Reese's peanut butter cups and Diet Coke.

Part three to come tomorrow... but remember my spoiler yesterday: Robbie is himself again. Thank you, Jesus.