We’re currently driving to Disneyland. I can’t help but think about how much has changed since last time we drove to Disneyland.
We came down in early December, having been aware for several months that Reese had epilepsy. We thought it was a “normal” epilepsy and naively weren’t all that worried about it – we were hopeful that with a little tweaking of meds, she’d be fine. Her seizures were myoclonic – blink-and-you-miss-it – so somehow we didn’t consider that while they were very short, they were wreaking havoc on her developing brain.
About a week before we left for Disneyland, we did a routine EEG and a day before we left for Disneyland, we got a call that the neurologist wanted us to come in immediately. I knew that couldn’t be good. I asked if I should cancel our Disneyland trip, but they said coming the day after we returned home would be fine. As I’ve said before, that Disneyland trip had a cloud over it. I didn’t know what was coming, but I knew it wasn’t good. We were committed to enjoying ourselves anyway and Reese loved Disneyland! Or so we thought. In hindsight, her personality at Disneyland (and the months before) was sort of comatose. She would get very serious on the rides – we thought she was taking it all in. She did seem to get a kick out of it all, but it may have also been a bit of stimulation overload for her.
When we returned home, we got the news – Reese’s epilepsy was worse than we had all imagined. I just wanted to be back at Disneyland – my happy place. I’m able to live in the moment at Disneyland. But instead, the rest of our December consisted of weekly doctor visits, starting a high dose of prednisone, having all the hopes imaginable after having our first seizure free day, being crushed when the seizures came back, getting immediately admitted into the hospital for a 10 day stay, starting a much stronger steroid, switching neurologists, stopping all current meds, starting several new meds, and starting the ketogenic diet.
The last few months have been an emotional roller coaster, to say the least.
Since we got the awful news, I kept thinking and dreaming about Disneyland. No matter where Reese’s development was, I felt she’d enjoy the sights, sounds… and smellilizers! I quickly decided that once she was off the medicine that suppressed her immune system (we were effectively quarantined for 3 months), we’d come back to Disneyland. I wanted to take Reese back to my happy place and just live in the moment again. I started counting down the days.
Last time we were headed to Disneyland, I could not have imagined all that would lie ahead for us. Late December when we were in the hospital and things were looking their worst, I could not have imagined that 4 months later, we would have gained seizure freedom by way of the ketogenic diet.
Well… we’re on our way! Packing for Reese’s ketogenic and other medical needs has been a challenge, but I’ve always been up for a good challenge. Especially one where Disneyland was the goal!
At this point, I think it’s safe to say I’m more excited about this trip to Disneyland than the average 6 year old.
