Disney ... Where Nightmares Happen

I referenced in my past two posts that Teddy got sick while at Disney. After a fun-filled day at Animal Kingdom, I had already fallen asleep when Dave woke me up by whisper calling my name, followed by the dreaded phrase, "There's something wrong with Teddy." Talk about going from a sound sleep to standing in the bathroom flipping on a blinding light in an instant. As soon as I turned on the light, we knew Teddy was having a seizure, and our nightmare was just starting.

There's some things I'm incredibly grateful for looking back on the experience:

1. My mental script of what to do when Teddy had a seizure worked perfectly from the rescue medication standpoint. He's never needed it before, but I'd mentally walked through using my Garmin watch to start a run to time a seizure to know when to administer rescue medication. 
2. Dave's parents were literally two doors down, so they were in our room within two minutes of me waking up, thanking to me pounding on their door waking them from a sound sleep. I couldn't be more grateful for all they did that night and the next day, as well as Dave's brother and his family ensuring AJ enjoyed his day.
3. Disney was incredibly responsive, having multiple people on site within 5 minutes of being called, all doing their best to help. They were also great after the fact, helping out with our journey back to the resort and calling the next few days to check on Teddy.
4. The EMTs were literally right down the road and were there within probably 10 minutes of the the moment when Dave woke me up. They were also great at their jobs and even offered for us to visit the station later in the week, although we didn't make it there.

This was the first time we've had to use Teddy's rescue medication since he got prescribed it in December 2017. All my fears of using it were completely overruled by the fact that he needed it, so again, that mental script worked perfectly.

This was also the first time Teddy's ridden in the ambulance with lights, sirens and the whole 9 yards. We called EMTs for the very first seizure he had but never since until now. He rode in an ambulance for transport back in December 2017, but that was once he was stabilized. This was a 30-minute ride with lights, sirens and even honking horns to try to get into the right lanes around drivers who didn't care about the ambulance. The sound the siren makes when it echos in the overpasses still sends shudders through me since I heard it so many times on that ride.

We spent the night at the Children's Hospital ER. The staff were fine, but it was such a different experience than when we've visited our local ER. There's something to be said for smaller towns where there's not so many patients. We got quite the response when Dave pushed the call button, though, when Teddy vomited all over himself and me because they thought he was having another seizure. We got released around 4 a.m. and had nearly an hour-long taxi ride back to the resort due to the taxi driver getting lost repeatedly. Let's just say we went to Hollywood Studios twice before 5:30 a.m. Oh, and the kind taxi driver gave us a tour of Orlando on the way, pointing out the nightclub shooting scene and letting us know when we were driving through the worst part of Orlando. Trust me, I didn't need that information at 4:30 a.m. when I was operating on less than an hour of sleep and a whole lot of stress.

Seizures suck.

We got back to the resort at 5:30 a.m. and sent grandma back to her room to rest (not that she got any rest) because she had stayed with AJ the entire night. AJ managed to sleep through us, Dave's folks and several Disney staff in our room with all the lights on and all the commotion. Guess we wore him out. AJ woke up at 6:30, after I had napped for an hour, so I took him to his grandparents' room and then attempted to fall back asleep. I woke up again at 9, took a quick shower and headed out for my first-ever (and second and third) Uber ride to get Teddy's rescue medication filled.

Tuesday was one of the worst days of my life. I was that person who spent the entire second Uber ride silently crying in the backseat because I couldn't handle being told that the first pharmacy didn't have the medicine in stock. Then, I lost it at the second Walgreens and had a complete meltdown in the bathroom. Then, to add insult to injury, the third Uber ride back to the resort got just as lost as the taxi driver and took me to Hollywood Studios a third time. (And, let's just say, they're not so keen on you driving through the parking lot without stopping when the park is actually open.)

Dave headed to meet AJ for his Jedi training-at my insistence-while I stayed with Teddy. I got puked on 3 more times and was convinced we needed to go back to the hospital because Teddy couldn't keep even the medicine down and was still burning up with a fever. I was terrified he'd have another seizure, so I was just waiting for Dave to get back to head to the hospital. Then Dave's mom showed up, and all of the sudden Teddy could move from his deathbed.

At the insistence that I needed to eat something, I went to the snack shop and proceeded to have another meltdown when the lady asked me how my day was. I don't think she was expecting me to burst into tears, so I made my way to the bathroom for my second bout of sobbing. And then when I got to the room again, I went to our bathroom to sob one more time before determining I needed to run.

You see, it's hard to run and sob at the same time. Running forces you to regulate your breathing and calm down. For the first time all day, I genuinely smiled and felt the tide turn in the right direction. We monitored Teddy closely and drugged the snot out of him with Tylenol and Ibuprofin, along with his increased dose of his anti-seizure medicine.

The next couple days were sketchy, monitoring him closely, keeping him well medicated and worrying. Turns out, as we discovered when we took AJ to our walk-in clinic Sunday, Teddy had strep throat. We had no clue until his seizure, and the only warning sign in hindsight was shivering before bed. We had attributed that to being chilly from a water ride and going onto an air conditioned bus. Even through the illness, there was no sign of sore throat that we could tell. We had fever and vomiting as his symptoms. He's a tough kid to diagnose with his lack of verbal communication and high tolerance of pain.

The saying ignorance is bliss is true. This event ripped away some of that ignorance, that ability to pretend it won't happen to us. Those kids who need ambulance rides for their seizures or who actually need rescue medications? That won't happen to us, even though Teddy has a rescue medicine prescribed. Yeah, right.

Then I think about all the what ifs, which is such a slippery slope. What if this happened on the airplane? Teddy could be the reason a flight is diverted for an emergency landing. What if this happened when we've been in some of our most remote national parks, literally 3 hours from medical services? I don't know. What if a seizure like this happens when Dave isn't right next to Teddy to notice that his breathing changed and something is wrong? I don't know.

The what if questions could go on and on, but that's not a productive line of thinking. The best we can do is work to be prepared in the event that we have a situation arise in the future, work on our mental scripts and continue to trust in God to help us along the way.

Happy New Year (And Memories of a Not So Happy New Years)

Happy 2017!

This past year has been the best year for our family since 2011. So despite the number of celebrity deaths, which really don't affect me at all, I'm quite content with how 2016 turned out.

To be honest, New Years is probably the most emotionally involved holiday for Dave and I, even though it's not much of a holiday. 2014 changed the meaning of New Years for our family.

We left the celebrations with Dave's family a day early, to finish his 12th day off work for Christmas break at home healing from the misery that plagued us that holiday season. As Facebook so kindly reminded me, we endured 3 bouts of stomach flu, 3 cases of pink eye, colds for every one and a sore back for Dave. We just wanted one good night's sleep and to spend the first day of the new year at home to recuperate before normal work schedules resumed.

And then Teddy has his first seizure. We had first responders visit our home for the first time ever. We headed to the ER with AJ in tow. Then Teddy had his second seizure. Dave's parents came and picked up AJ. My mom headed over to spend a few days at our house. We prayed, along with our family and friends, and were terrified. We left the ER that day with a tentative diagnosis of febrile seizures, even though Teddy was technically too young at 5.5 months to be diagnosed with them and his fever was relatively mild. We also had a referral to Children's Hospital to see a neurologist and schedule the first (of several so far) EEGs.

The last 3 years have aged us about 10 years. Two of my baby-faced boys snuggling after seizures.

We had no idea then the journey we were beginning. We were hoping it was febrile seizures that he'd outgrow. We didn't know it would take a month to get to see the neurologist and even longer for the EEG to be scheduled. We couldn't predict that it would take nearly two full years to actually get a diagnosis.

That New Year's Day is the day that our world changed. Actually, our world changed when God blessed us with Teddy, but January 1, 2014 was the first strong hint at what was to come.

Fortunately, there's been so much good through the years and so many blessings, including Teddy being seizure-free the longest he's ever been. That alone removes so much stress, fear and sheer terror from our lives ... or at least puts it in the back of our minds. Still, we remember that day in 2014 like it were yesterday. And you can be certain that all of us ate our black-eyed peas for good luck today!

(It's a Southern tradition to eat black-eyed peas for good luck to start the New Year. I hated them as a child but grew to tolerate them through the years. We skipped them a few years. We ate them January 1, 2016, and it was a good year for us. I'm not superstitious, but this is something we apparently just need to do.)

Party Like You've Been Seizure Free for a Year

In case you thought I was kidding about celebrating today as the anniversary of one year since Teddy's last seizures, I wasn't. We really had a party for him tonight.

One happy boy with his cupcake!

It was just a small gathering with my friend and her daughters, which was perfect. Her younger daughter plays so well with AJ, and her older daughter adores Teddy. We made homemade pizza, ate delicious cupcakes and simply spent time together.

Dollar Tree is the best for simple parties.

We also had balloons, which Teddy loves, party favors and decorations. Like I said, it's a day to celebrate, and celebrate we did.

Word of warning: never buy these whistles. They are the definition of annoying.

Today We Celebrate

Today is a good day. An amazing day. A day to celebrate.

Today marks the one year anniversary of Teddy being seizure free. Teddy's last seizures were on Father's Day on June 21, 2015. Here's my Facebook memory from a year ago: Happy father's days to all the dads, especially Mike Kassie and Dave Blondheim. I'd be lost without you guys. On a positive note, AJ drew his first picture of a person tonight-a picture of Teddy to make him feel better after he had another seizure. Right now Teddy is sleeping with ice packs under him, trying to keep the fever from spiking again and causing more seizures. Obviously Keppra isn't going to stop him from ever seizing again, not that I really thought that but it was nice to pretend.

Some children with this diagnosis have frequent, at times uncontrollable, seizures. We've been extremely fortunate that Teddy's only had seizures every couple months or so, starting when he was 5 1/2 months old. Don't be fooled by the word "only." That word describes the frequency, not the fact that each seizure episode ripped our lives apart, scared us beyond belief, at times entailed an ER trip and took a few weeks each time to ease back into normalcy. Although I'm grateful for the relative rarity of Teddy's seizures compared to what could be, in ways I think it made each episode harder because we got up our hopes that he wouldn't have more ... that he had outgrown them ... that we were safe not to worry constantly ... and then the next episode would happen and shake not only Teddy but our entire world.

This was our first ER trip for seizures on New Year's Day 2014.

We put Teddy on Keppra in May 2015 after switching neurologists to a wonderful doctor who engages Teddy and asks us each visit, "What is on your heart?" (Beyond that, rumor is he's pretty darn smart, too.) It's not that our former neurologist didn't recommend Keppra, but we never got our questions answered to the extent that we felt comfortable putting Teddy on an anti-seizure medication with potentially serious side effects. The Father's Day episode one year ago were the first, and only to date, seizures since putting Teddy on Keppra. (It was one of those two-for-one seizure specials he sometimes has. Technically his last seizure was at 1 a.m. June 22, which is why this post will go up at 2 a.m. June 22.) After that, we increased his Keppra for about a month until we couldn't stand how miserable he was. We decreased his dose just in time to enjoy Teddy's true personality again for a family vacation. Since then, we've tweaked his Keppra twice to accommodate his growth and keep him in the therapeutic range of the medicine.

But that's enough medical history. Today we celebrate.

We ignore how much more the next seizure will shake our world because we've gotten so comfortable. We don't get our hopes up that in another year Teddy might be able to wean off anti-seizure medication. We don't relive the past. We don't worry about the future. There's time enough for that on other days.

Today we eat delicious peanut butter cheesecake brownie cupcakes. (Teddy told me that's what he wanted. I read his mind. Or my mind.) Today we make homemade pizza with friends. Today we play with balloons. Today we celebrate and are grateful for this milestone.

Happy New Year! (First Seizure Episodes)

This day will remain forever etched in our minds.

The holiday season had been filled with sickness for us: stomach flu for most of us and extended family, colds for most of us, 3 cases of pink eye and a strained back (due to vomiting with the stomach flu). We actually came home from celebrating with Dave's family a day early because we just wanted to recover for a day.

After eating lunch, I was holding Teddy while Dave and AJ finished eating. Teddy suddenly went limp and started shaking. I looked at Dave and we were confused as to what was happening. As it continued, we thought it was a seizure but had never experienced one. We called the nurse call line for our insurance to see what to do and were instructed to call 911.

We prepped AJ for the paramedics by telling him some special friends were coming to check on Teddy. When the paramedics arrived, they checked out Teddy, who was mostly back to normal. Since all his vitals were fine, they said we could transport him ourselves.

We headed to the ER with AJ in tow. Dave's folks headed down to pick up AJ, and my mom began the 2.25 hour drive to our place as well. While at the ER, Teddy was kind enough to have another seizure, so we weren't the only ones to witness it.

After scary hours, including debates of whether to send us via ambulance to Children's Hospital in Milwaukee, we were released with a diagnosis of febrile seizures as he had a fever of 100.8°F. The diagnosis didn't quite fit because they typically don't occur until a child is at least 6 months, but we left with the hope that this would be the only time it occurred and a referral to a pediatric neurologist.


And this is the start of us realizing how unique Teddy was ... although this was the tip of the iceberg.