We are finally all settled into our new house- almost every room in the house has been redone. We decided to take a break after the basement (now a home theatre/playroom) was complete, which was probably a good idea since Greyson’s epilepsy has been off the charts. After his appointment with the Neurologist in October, Greyson’s medications were increased and we scheduled a 24-hour EEG at the Children’s Hospital of Philadelphia. The Neurologist and Neurosurgeon were hoping to pinpoint where exactly the epilepsy is occurring in the brain, so we had a surgical plan for his upcoming brain surgery. Naturally, like every other daytime EEG he has had, the epilepsy decided not to show its ugly face with any Grand mals, and Greyson ended up being admitted for 2 1/2 days, rather than 24 hours.
The most difficult part of an EEG for Greyson is when the techs apply the glue/electrodes onto his head. I tried to prepare him for a less difficult application, but cutting his hair the night before the admission, but due to his uncooperation, I ended up only cutting 3/4 of his hair. I knew that the glue was going to be harder to come out of his longer hair, so I attempted to be proactive- unfortunately it ended up just being a hot mess. I had prepped the admission team in advance and told them that Greyson was most likely going to need a papoose and lots of distractions to get the electrodes on well. The team sent childlife in to play and bring toys in, to try and keep him distracted from the glue/hair dryer they use to apply the electrodes. Once he suffered through the stench of waxy glue being slopped into his hair, his head was wrapped several times so he couldn’t take the wires off. Fortunately the final product made Greyson look a lot like Johannes Vermeer’s Girl With the Pearl Earring, (See Below).
My father-in-law went along with Derek to the hospital for the EEG, so I could stay home to work and keep Roslynn’s routine as normal as possible. The first night, nobody really slept at the hospital. They stuck Greyson in a giant crib-like bed, surrounded by plexiglass and padding, in case he was to have a seizure while he was asleep. Unfortunately, this meant that only Greyson could sleep in it. Greyson will not sleep unless someone is holding him or snuggling with him, so the first night was a lot of up and down, tossing and turning and whining. The second day, the doctors informed Derek that they didn’t see what they wanted to see, so they asked them to stay another night. Greyson was already fed up, but we really wanted to catch a Grand mal on EEG, so he reluctantly agreed. By the evening of the second day, Derek, Rick and Greyson were all done. Exhaustion and frustration had kicked in and by 9 pm, Derek was in a bigger crib-like bed with Greyson, calling it a night.
The next morning, it was suggested that the boys stay another day/night at CHOP, but sensing Greyson’s increasing frustration, Derek requested that they be discharged to come home. At the end of the entire ordeal, Greyson had consistent sharp waves on his left side of the brain while asleep and while awake, which was a new founding. Previously before the increase in breakthrough seizures, Greyson was only having the sharp waves while he was asleep, which prompted his ESES diagnosis. Now that the spikes and epileptic waves are happening while he’s awake, it was suggested that we possibly add another medication to his daily cocktail of anti-seizure medications. Derek and Greyson finally got home around 1 pm on Saturday afternoon, just giving us enough time to let them shower, eat and rest before heading up to Hershey for a drive-thru light display. Despite being away for two days and being hooked up to a bunch of cords, Greyson was in such a great mood when we drove up to see the lights.
Naturally once Greyson was off of the EEG, he began to have frequent seizures again. I was contacted by the school nurse on Tuesday, saying that G was having seizures frequently all morning and that they were ready to administer his emergency medication (which means they call 911, too). Fearing that I would have to call off for the rest of the day, I asked the school to call me if they were absolutely administering the medicine, so I could try and intercept the ambulance before taking him to the ER. Luckily, Greyson was able to get back to his baseline and slept it off for a bit, so I was able to work the full day and he seemed pretty happy once he got home. The school staff is so great with documenting everything at school, so it was easy to send a log of his seizure episodes that day, directly to the Neurologist’s office. Unfortunately, I had to communicate with the on-call doctor, since Greyson’s regular doc was out on vacation. We came to the conclusion that with the sharp waves and spikes on the EEG, the two medications he’s already on and the amount of medications we have tried in the past, it was time to add a third medication to the regiment. The new medication, Epidiolex is processed and absorbed into the body via the liver, so we have to get baseline lab work done for him before we can start it on Tuesday and we will have to continue to get monthly labs for awhile, too. Epidiolex is a CBD based drug, made at specialty pharmacies and is monitored very closely when administered. This particular medication is used for individuals over the age of 2 that have Lennox-Gastaut syndrome and/or Dravet syndrome. Though he has not been diagnosed with either, his epilepsy is intractable and we are essentially buying time for us to find out what surgical option will be the best choice. Fortunately Greyson’s insurance decided not to mess around and we got a prior approval for the medication, which costs $32,500 per bottle per month (without insurance).
The craziness of unpredictable epilepsy and behavioral challenges keep us on our toes, but the holiday season always makes me feel so excited for the kids. We try to make every weekend some sort of holiday fun, starting with Black Friday, until Christmas Eve. In our new town this season, we have taken the kids to a few different light displays, Dutch Wonderland and to some local events in the community. We are trying to expose Greyson to as many things as we can, in hopes that he may get more used to being out in public. We took him to a local park that was doing a walk-thru light display, which we thought would be perfect for Greyson, since he likes to be constantly moving. He quickly became overwhelmed by the amount of people at the event, and cried most of the 1/2 mile walking path. Derek doesn’t mind it much, but I really have a hard time with people staring at us when he’s having his meltdowns at something this should be joyous for kids. Being out in public, we often have Greyson on a backpack tether, so he can’t run off or get lost. I’ve noticed that people are a lot more sympathetic when he has his medical helmet on (probably because people feel bad for staring or questioning a kid that looks disabled). But when Greyson doesn’t have his helmet on, like at this particular event, the stares and comments under people’s breath really irks me. We hurried through the rest of the walking path and tried to move G out of the busy areas, but it was too much for him. Luckily, my in-laws came along with us, so they could hang out with Rozzie, entertaining her as we took G to the car for a movie and quiet time. Roslynn had a blast, going on a hay ride, a tractor ride, getting some treats and listening to some music. I’m also fortunate that my mother-in-law likes to take lots of photos like me, so she was able to capture some while I was dodging snarky comments and stares. Maybe a good 2022 New Years Resolution should be simply not giving a flying f*** what people think and for me to stop feeling like I have to make our family appear “normal” when out in public. No family is “normal”, so why should I feel like I always have to hide, just to avoid rude comments and looks from others?
As another year ends and a new one begins, we look back at the last 12 months and reflect upon many things: COVID, family, friends, work, happy times and sad times. I’ve tried to look at 2021 on a day-by-day basis, often trying not to think too much into the future. I’m honestly happy when I go to sleep and wake up the next morning, regardless of the chaos of the day that awaits us. Especially this time of year, the happiness on the children’s faces as they open gifts, look at Christmas lights, or chase each other around every morning looking for our silly Elf on the Shelf (Mr. Ninnymuggins), I always feel so wholesome when I see their eyes light up with the magic of Christmas.