Tuesday, March 8th was Greyson’s VNS activation day. As I’ve said in previous posts, his VNS voltage level will be slowly increased over the next 12-16 weeks, until we are at a level that will work for him. The neurologist isn’t expecting us to really notice any change or improvement yet, since the device is on the lowest setting currently.
Tuesday, Greyson and Derek had a follow-up with the neurologist, who said Greyson’s incisions were healing well and again reiterated that we most likely will not see the benefits of the device quite yet. The doctor said that we only really needed to contact her if we noticed any side effects.
Not being able to attend the appointment, I gathered all the info about how to use the device, from Derek. He showed me how to use the magnets across his chest, in case of a seizure, and also explained to me that the device runs for 30 seconds every 5 minutes.
I was a little confused, wondering how I would know when the device is running for the 30 seconds, but I caught on quickly. Every 5 minutes, Greyson turns into a mini Chewbacca. Seriously. He vocalizes and because the lead from the device is wrapped around his vagus nerve, extremely close to the vocal folds, he makes an odd Chewbacca-like throat purr. It’s actually really funny to hear, but also good to know if the device is working more than every 5 minutes, to prevent a seizure. It’s almost like a little warning that one may be coming, so that’s helpful.
The first evening with the activated VNS, Greyson had a partial tonic-clonic seizure. Not feeling too optimistic that the magnet would help (due to the low voltage), I started the timer while Derek ran to grab a magnet and the emergency med. To sum the process up, the magnet is held over the device (in Greyson’s chest) for 2 seconds. Anything over 2 seconds shuts the device off. We can use the magnet two times, one minute apart each time. If the magnet does not stop the seizure, we use the Diastat suppository to stop the seizure. Derek held the magnet over the device and within 10 seconds, Greyson stopped seizing. I was in complete disbelief. It actually worked!
The next seizure happened Friday evening. Same situation- Greyson began to seize and within 30 seconds of the start, we used the magnet. This time though, the magnet wasn’t working. We tried again a minute later and luckily, Greyson stopped seizing. The two seizures he has had this week, each lasted under 5 minutes total. A week ago, Greyson’s seizures were lasting up to 30-45 minutes each. His emergency medicine isn’t working as well to stop his seizures, but I am hopeful that once the voltage of the VNS increases, we will really start seeing more of the magnet and less of the medication.
As if Tuesday wasn’t eventful enough, the kids both had dental appointments in Philadelphia, at UPenn. Roslynn, who swears she had no cavities because her teeth are white, had a clean bill of dental health. Greyson however, did not. I knew that Greyson had a cavity forming in his lower right side of his mouth, so I wasn’t surprised when the dentist said we would need to set up a visit to have his cavity filled. Unfortunately, Greyson is too aggressive to use the laughing gas on, so he will need to undergo dental surgery at CHOP. The wait for an appointment to get the cavity filled, is about 5-6 months, so we have to monitor his tooth and make sure it doesn’t become infected.
This kid just can’t catch a break.
Some times, I wish that I had a “normal” life, with kids that don’t require several appointments per week. I swear, the school Secretary is my personal truancy stalker. I’m shocked we haven’t received any notices yet regarding bringing the kids in late, picking them up early or keeping them home.
I guess eventually we will get him into the OR and they can fill the cavity, get some good X-rays and put some sealants on his teeth, so we can prevent this from happening again. Also, he really needs his extra tooth taken out (a weird genetic thing he inherited from my side of the family) before he loses baby teeth and the adult teeth come in all weird.
Guess for now while we wait, we continue to increase the VNS power and pray that it continues to work for our little man. Holy Spirit, activate! ….but really, cut him a break.
Back when I was working in an office, I woke up at 4:15 am every single day. That gave me my “me” time each morning to shower, get ready, watch an episode of my favorite show and to purchase a coffee before my 7:30 am start time at the office. Now that I am working from home and have little face-to-face (via Zoom) interactions, I get up at 7:30-8 am to begin work at 9 am. I’ve always been a morning person, dubbed the granny of my family because I would go to bed at 7:30-8pm and get up between 4-5 am, since I was a small child. My mother always joked that “if (I) didn’t get at least 8-9 hours of sleep each night, I’d get grumpy or I’d be sick within 3 days”. I have been seriously neglecting my sleep as of recently, especially over the past month or so, when my Mother passed away. I’m finding myself staying up until 12 am, getting up for about an hour between 2-4 am and then going back to bed until 8 am, when Roslynn typically comes into my bedroom to wake Greyson for school.
Like Dr. Lynn (my mother) stated, the lack of sleep finally came up to bite me. I started with a sore throat/stuffy nose on Wednesday (last week), after Roslynn brought home the lovely sickness from her 1st grade classroom. Unfortunately, the love was shared to Greyson and Derek, too, so all four of us have been sick for about a week now. With Greyson’s upcoming procedure, we didn’t want to take any chances of him being turned away at the hospital, due to his symptoms, but luckily he was able to manage and the procedure was still a go-ahead.
When the nursing staff contacted me on Monday with an arrival time of 5:30 am for Greyson’s surgery, my head hurt even thinking about getting up at 3:15-3:30 am to leave by 4 am. With the lack of sleep already weighing me down, the drive to Philadelphia at 4 am was not thrilling. Worst of all, Greyson is afraid of the dark, so driving before the sun comes up, was not easy. Apparently trucks also flood the PA Turnpike on Tuesdays too. This irritated Greyson (and me) quite a lot. He spent about an hour of the trip, crying and high-pitched screaming. Sleep deprived, hungry, lacking caffeine and driving 70-80 Mph along side of hundreds of trucks, was really not helping my excitement for the procedure. I could feel my anxiety closely hitting my breaking point. Luckily, a few songs from Encanto calmed Greyson down, and he ended up falling asleep for the rest of the ride to CHOP.
The area around CHOP has been under construction for well over a year. The area is flooded with pedestrians, many students or residents at the hospital, and the bumper-to-bumper traffic is enough to stress even the coolest customer out. This time Derek knew where we were going, since I had never been to the main hospital before. We entered the underground parking lot at the hospital and to my surprise, there was little parking available. We had finally found a spot and hurried up to the main area for check-in. Most of the morning was uneventful. Greyson has been doing SO WELL with getting his weight, temperature, blood pressure and breathing checked out. Guess 5+ years of it finally has given him enough exposure to allow him to tolerate it. We met with several nurses, the child-life team and the anesthesiologist before Dr. Kennedy came in to brief us on Greyson’s procedure. After thorough explanation and questions being answered, we were ready for Greyson to receive his “happy juice”.
“Happy Juice” is what we call the Versed that is administered to Greyson before an IV or procedure is started. He receives it in the form of a nasal spray, and typically begins working within 5 minutes. I was a little weary, not optimistic that the spray would work, since he was fairly congested. Proving my skepticism wrong, Greyson was feeling VERY good within a few minutes, and he was ready for surgery. We said our goodbyes, but rather than have him put under right in front of us, he was such a big boy and was wheeled to the OR without us. As happy as I was that he is finally allowing others to touch him, or able to go places without us, it made me sadly realize that our little man isn’t so little anymore.
In the surgical waiting room, Derek and I both fought off the urge to fall asleep. We waited for about three hours before Dr. Kennedy briefed us that everything went well. He did warn us that Greyson would be a bit red in the face, due to his allergy of adhesives and the need of having to use tape to keep his eyes closed during the procedure. Once we were done talking to the surgeon, we were brought back to Greyson, who was still very much out of it. In fact, it was over an hour before he finally was able to slowly wake up from the anesthesia. I was taken back by the size of Greyson’s incisions. He has one on his neck, where the lead is wrapped around his Vagus nerve, the other on his chest, where the implanted device is. Both are fairly large, but I am hoping we will see them fade as soon as the spots heal. Once he was awake and able to tolerate some fluids, we were ready to get Greyson home. The ride home was fairly smooth. The Schuylkill wasn’t too congested and we were able to get home within a reasonable time.
So far, Greyson has showered and hasn’t had any issues with picking at his incisions yet, which is a huge concern of ours. Infection of these spots is high, because of where they are located, so we are making sure they stay clean and there are no signs of infection. Next week, we will see the neurologist again and she will activate the device. As of right now, our job is to make sure Greyson tolerates everything well and that there are no issues. Every two weeks, we will be required to go into the office and the neurologist will gather data from the device, and increase its power. Within the next couple of months, Greyson will be fully healed and his device will be fully functioning. We are extremely hopeful that the device will work and we can get Greyson some relief with these constant seizures, especially before our trip down south this summer.
Greyson doesn’t have many restrictions, post-surgery. We laid low yesterday once we were home, and again today, just to give his body time to recover. He got a new trampoline for his bedroom (my idea to try and have him stop jumping on beds), which he LOVES. He spent the entire day on Sunday, just bouncing away. I must say, though it does take up most of his bedroom, it is probably the best investment we have made in awhile for him. It seems to benefit us more than him, tiring him out for us to get him to bed sooner. AKA a win for us all.
Another early morning trip to Philadelphia on Friday, brought us face-to-face with the surgeon who will be performing Greyson’s VNS implant procedure. Dr. Kennedy is a CHOP neurosurgeon who has performed this procedure hundreds of times. I’m confident that we are in very good hands and that Greyson will (hopefully) benefit from the device. Our initial consult was on Wednesday with the nurse who is responsible for activating the device, and she explained to me the device, how it exactly works, and how Greyson may benefit from the procedure. 1 out of every 3 patients have some success with managing seizures with the device. Though its not a 99.9% chance it will definitely work, Derek and I figured it is certainly something worth trying. After going through so many medications, we think this is the best decision to move forward. I just hope that 2 is a lucky number because his procedure is scheduled for 2/22/22.
The really cool thing about this device, is that it comes with a “magic wand”, that we can wave over Greyson’s chest if we feel like he’s going to have a seizure, or if he is actually seizing. Once we wave the wand over his device, it will activate and send a shock wave up to his vagus nerve, in his neck. That nerve then is responsible for telling the brain to calm the f down and stop sending epileptic waves to the brain. Kinda cool. The only thing that isn’t kinda cool, is that it takes the device about 3-4 months to be fully functional, and we have to take him into the neurologist’s office in Lancaster every 6 weeks until it is functioning at the appropriate level. We decided to get the procedure as soon as possible, so he was healed and (hopefully) adjusted well to the device before we go on our trip this summer.
Another downside to the device is that if the implant doesn’t work how we want it to work for Greyson (which it is common), we would have to wait several years before trying another surgical route. Dr. Kennedy explained that they don’t like to open up a child’s skull until the skull is fully matured and finished growing. We are really hopeful that this will work in our benefit.
Leaving Philadelphia on Friday to come home, it was so strange. I typically call my Mom once we are on I-76, to discuss the appointment and to get her opinion about what the doctors recommend. While pulling onto the turnpike, I realized that I couldn’t call my Mom and that she is gone. My emotions have been all over recently, and now to have this on top of it all, I am over 2022 already! I have been working hard on keeping myself distracted (otherwise I cry a LOT) by renovating old furniture. I have sold my first two projects, a vanity and a kitchen island and am SO excited to start working on my next project, a kitchen table. While this did start as a hobby, it truly has helped me cope with losing my Mom and all that is happening with G. Going back to work in the mental health field, while trying to cope with severe loss and grief, has been no easy task. The first week or so back, I was able to help out with insurance tasks, so I didn’t have to take any phone calls about individuals seeking therapy. First day back on the phones, I did get a pair of siblings who were seeking therapy to cope with the fact that their mother has terminal cancer. Even talking to the one sibling, I completely lost it.
I am not a cry-er. I honestly have cried more this month than I have in my 32 years of existence. I just never imagined losing my amazing Mother so young in life. By far the hardest part is having to discuss her passing with Roslynn, who now knows exactly what is going on. I am okay talking with her, but the random times when she gets tears in her eyes and says she “misses Nana”, are the hardest for me. Roslynn and my Mom were two days apart, both Geminis and I am a firm believer that is why they were so close. Two (not so old) souls who shared their love for music, family, card games and vintage barbies. And luckily, Greyson is blissfully unaware. At least I think he is. Regardless of our loss, I am happy that Roslynn has continued to push through first grade and continues to improve with each month that passes. I know my Mom would have been so proud of her and would have loved to listen to her read “Hop on Pop” to Greyson, as she does often before bed.
We are gathered here today to get through this thing called life.
I fully embrace this quote. There are so many that I could write down that I relate to at this moment, but for now, I am getting through this life. Each day of chaos brings a new tomorrow, and though I am living in a complete blur at the moment, I am trying to find the positives in it all. Though I have had phone calls from his school almost daily due to seizures, a positive is that Greyson has not had to go to an emergency room in about a month or so. Small wins, right? For now, I will continue to push through life, accept the school’s phone calls, and use my new hobby as my coping mechanism. My Mom would have really liked my love for vintage furniture and chalk paint.
According to the Merriam-Webster dictionary, the word Mother has a relatively short meaning: a female parent. Three short words to describe such a monumental figure in one’s life. When I was a child, if I so much as thought of the possibility that my parents were gone, I would burst into hysterical tears and weep. The concept of not having my parents around, was something I couldn’t bear to even imagine, and even in through my 20’s and early 30’s, I still could barely even think of the idea.
Unfortunately, this idea and nightmare that haunted me from my childhood, became real. During the very early hours of Wednesday, January 5th, my mother passed away.
For the past 16 months, my mother fought the most courageous battle with Acute Myeloid Leukemia. She was a very private person, so only a limited amount of people knew of her diagnosis, most of us not even knowing the full extent of the illness until it was too late. My father, her partner for nearly 37 years also did not know much of what truly was going on- she hid it from him as much as everyone else in her life.
My mother was a self-less person. She was a social worker who’s life mission was to help people, and she did that every day of her life, even if it meant she had to neglect herself for those she was helping. I like to believe that she hid so many things from my father, siblings and me, to save us the suffering that she was internally dealing with.
My mom was my go-to when it came to Greyson and decisions I had to make. I felt like she always had the right answer and always gave the best advice, even if it was tough to hear. She adored her children. My favorite memories of my childhood, were when my mom was a stay-at-home mother, which was mainly during my toddler years. My mom would take us to the park, to the library, to the museum- so many places throughout Lancaster, we were never cooped up in the house. We were living in the west end of the city at the time, so we could walk easily to Buchanan park and the North Museum. I loved being able to spend time with my mom, especially at the library, when I would force her to read me a stack of books that I would bring over to her from the children’s section. Once Amanda went to Kindergarten, I got my mom all to myself.
Days as the “only child” were great! And although Amanda was only in a half-day Kindergarten program, my mom and I ran errands while Amanda was away, I would have lunch and then we would “nap” in her bed for some quiet time while watching shows like “Days of our Lives” and “As the World Turns”. I hated the shows, but I loved curling up in my parent’s bed, just me and my mom. Most of my childhood memories always involved Amanda, Mom and I. My dad sacrificed his time with us as little ones, so my mom could stay home.
Watching my mom bring two other children into the world, I saw what kind of mother I wanted to be when I grew up. Managing 5 girls in one house, grocery shopping, organizing events, sewing our Halloween costumes, helping us with our homework and working (she went back to work once Rebecca was born), was not an easy task, yet she did it so well. She also was a Girl Scout Troop leader for several years and was a “mom” to all the girls in her troops, too. Though I was in school during the week, she always used the weekends to get things done and still managed to take us to the library and other places…..it just took a bit longer with 5 kids.
By the time Middle School came around for me, my mom was at all of my field hockey games, choir concerts, musicals and band performances. She also went to Amanda’s concerts, musicals and supported us through all of our extracurriculars. Once I started High School, I was her first child to do Marching Band, and I’m fairly positive in the four years that I did band, my mom maybe missed one or two performances. She was at every single concert, recital, science fair, awards ceremony and musical. Every single one. Between Amanda and I in High School and Rebecca and Sarah in groups during Middle School, my mom was one busy woman, never taking a weekend “off” or any time to herself. Yet through it all, she never complained about supporting us, being a chauffeur or all of the events she had to go to.
Being able to have 32 wonderful years with my mom, has truly been a blessing. Just like trying to look on the bright side of our situation with Greyson, I am trying very hard to see the bright side of life right now. As much as its unfair that I didn’t have more time with her, the time that I did have with her was wonderful. I was able to see her become a grandmother to mine and my sister’s children, and the love that she shared with my dad, was one that only few find in life.
A mother’s love is a self-less love. From the moment she became a mother, my mom worked every single day to be the best she could be. We always came before anything else. We were always supported. We were always cared for. We were always loved. We were so incredibly lucky to have her.
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.
Feels like it’s been weeks since my last update, but sadly it’s only been a few days.So much has happened over the course of 7 days, I feel like time stopped and just completely threw me for a loop. I believe Greyson had an ER visit when I made the last update, but that was just one of several seizures over the past week. Thursday and Friday were regular days, nothing too exciting except that I was swamped at work. Seriously, I thought my previous job was a lot of service requests, but at my current position, I feel like I have zero time to put down the phone and breathe! I love this job, I enjoy working from home and despite sitting in a basement in a dim-lit room, I feel as though I am making someone’s day better by chatting with them.
Saturday, I had an appointment to discuss the end of my lease for my 2019 Chevy Equinox, so I was gone for most of the morning. Greyson was very active and fairly irritable the entire time I was gone, so I took him up to lay down for a nap once I got home (not gonna lie- I wanted one too). It didn’t take very long until Greyson was out cold, snoring away, face down in the mattress. I was about to doze off myself, when I heard a clicking sound coming from the other side of the bed. I looked down and saw Greyson starting with his typical early seizure symptoms. I moved him down to the floor and started the timer, all typical protocol for his seizures.
When Greyson has tonic clonic seizures, he’s typically unconscious until his emergency medication takes over and he slowly comes out of the seizure. But this time was very different. After 5 minutes of seizing, I administered his meds and waited for the convulsions to stop, only this time, they weren’t. I kept looking at the clock and 30 seconds went by, then 60, once we were hitting 90 seconds, I was panicking inside. I was trying to catch my breath through the panic, that I didn’t notice Greyson was not breathing at all. His lips began to turn a blueish gray color, then I watched as his rosy cheeks went from a healthy shade of pink, to a gray, lifeless color. At this point, I had Derek call 911 and we could hear the ambulance coming from the EMS station, about a mile away. Our neighbor, who is a truck driver by day and EMS/Firefighter volunteer by night, was the first person to come rushing over. I had not met this neighbor yet, so this was quite an eventful way to introduce myself.
As the rest of the EMS crew arrive, several faces were very familiar. It only took about 5 seconds to realize that holy crap, these are the same EMS staff that were at Greyson’s school to transport him to the hospital on Wednesday! After an awkward “hello, remember us?”, Greyson was evaluated. His vitals and blood sugar was all normal and coincidentally, the ER doctor on call for emergency calls, was also the same doctor who evaluated Greyson in the ER earlier in the week. Greyson had not returned to baseline yet, though the seizure had stopped, so the staff was very concerned that he had not woken up or really even flinched when being poked at. The lead on the EMS team waited and suggested we call the on-call doctor at CHOP. While waiting for a return call, Greyson finally was able to come to and the EMS staff said they felt confident enough that he was back at baseline and that going to the ER was not really going to make a difference at that point.
After documenting the seizure and watching Greyson closely, CHOP finally called us back and the one-call doctor increased his new seizure medication, Briviact. If you read my last post, you know that when Greyson was prescribed this on Wednesday after the seizure at school, you know that we only got the medication approved by calling the insurance and pushing for an emergency authorization. That auth was approved for a five day supply of medicine. Now that the on call doc was increasing the medication, we were going to run out before the five days were over, so I immediately called the insurance to ask for more medication to be authorized. Guess that’s not a common request, so I was on the verge of tears, basically begging the customer service rep to speak to a higher up and get us an approval, which luckily worked. We began the higher dose that evening and things appeared to settle down.
Due to the increase in seizures and the new medication prescribed, the neurologist’s office reached out for us to move up Greyson’s appointment to today (Wednesday). I was swamped with phone calls in the basement office, so I had Derek do the appointment with Greyson. The neurologist seemed to be concerned about the increase in seizures and that Greyson was not responding to any medications. I’m now paraphrasing what Derek explained to me after the appointment, so I too am attempting to process and understand all of her suggestions and ideas.
The doctor explained to Derek that if Greyson continued having these breakthrough seizures, there is a third medication we could try to use to control them. Though pumping Greyson with seizure medications sounds like a temporary fix, she did recommend a more permanent treatment that could help control the epilepsy. She suggested that we consider a surgical approach to manage things. Now Greyson has not been formally diagnosed with the MIC-CAP syndrome associated with the genetic mutation he has, but more and more co-morbidities associated with the syndrome are beginning to manifest. The main signs/symptoms of the MIC-CAP syndrome are as follows:
Issues with brain development in-utero
Epilepsy that does not react to anti-seizure medications
Developmental delay/Intellectual Disability
Capillary malformations appearing on the surface of the skin as a Port-Wine Stain birthmark
Abnormal nails and joints on the fingers and toes
Unusual hair growth patterns, such as multiple swirls
The affected child does not learn basic motor and developmental skills such as holding their head up independently or sitting in an upright position
Keeping up with me? If you are keeping track and read my previous post, “Isn’t that genetic?”, I explained how this genetic mutation was typically inherited by both parents and both parents are typically a carrier of the mutated gene. In Greyson’s case, he only inherited one mutated gene, so his condition does not directly look like a typical case of MIC-CAP syndrome. Truth be told, there are only a handful of studies about this condition, because it is so rare, so no one really knows if he could have a “partial” case or it’s just a big coincidence that Greyson has almost all of the symptoms, except for a small head. I do not have a PhD or any medical background other than IB biology, some psychology courses, chemistry and an anatomy class, so I am certainly not attempting to diagnose here. I just do my research, read a lot about medical stuff and always look into any sort of treatment options for Greyson before agreeing to them.
In reference to the intractable epilepsy, the neurologist is making a case to the neurosurgery team that Greyson would be a good candidate for VNS therapy. VNS stands for Vagus Nerve Stimulation therapy, which is a newer procedure, where an implant is placed in a patient’s chest (a lot like a pacemaker) with a wire leading up to the brain via the Vagus nerve in the back of the head. The implant (or generator) then sends electroshock pulses to the nerve and brain, to prevent the brain from slipping into an epileptic episode. This treatment has proven to be especially successful in patients with ASD, because it can help reduce the irritability that often comes with Autism. The only downside to this treatment is that the implant’s battery only lasts 5-10 years, so if it is working for Greyson, he would need frequent surgeries to replace the generator. He could have complications with said surgeries and that is always a huge risk.
So, our next step is to take the referral and set up an appointment with the neurosurgical team at CHOP to discuss our options. If Derek and I chose to do this and we proceed with the procedure, the potential benefits certainly outweigh the risks and we would both do everything and anything we can to improve Greyson’s quality of life. I have a lot more reading to do and questions to ask before we decide anything. For now, I will poke fun at the fact that Derek called the Vagus (pronounced like vay-gus) nerve the “Vaguna” nerve when explaining the therapy to his mom. Maybe we both should do some reading- lol.
As far as the car goes, I did turn in my little Equinox and upgraded to a mom mobile. No, I will never and won’t ever drive a mini van, so I was able to find a super nice Chevy Traverse for a very good deal. I’ve cut my lease ways and decided to buy finally. Guess we will need the bigger car, so we can fit two growing kids and a mini-sized pony (Mr Duke) in the back seat.
There’s never a dull moment in the Martin household. It’s been awhile since I’ve posted- about 4 months to be exact. The summer was filled with complete chaos, packing an entire house, getting the kids set up with their new school, physically moving, remodeling and starting a new job. On top of all that, Greyson began having some pretty serious seizures again.
Part of the reason why we moved to our new town, was because the school district is wonderful for ASD and special needs kiddos. Greyson’s teacher in particular is VERY knowledgeable and has been doing this for some time. She has lots of experience with children who have complex medical backgrounds, behavioral issues and kids that require the specific ABA/Intensive Teaching programs. We went to G’s IEP meeting in August and were very impressed by the district and the special education program and knew that we made the best choice possible for the kids. The kids started school in August and until the end of September, Greyson was really thriving in the classroom and was really enjoying the bus ride to and from school. Because masks are “required” in the district, many children don’t wear them because of “medical exemptions”, which has caused several COVID outbreaks and quarantining for children. Both Roslynn and Greyson started with fevers, sore throats and nasty coughs at the end of September. Within a week, I had two sick kids home from school and a phone call from the school nurse stating that Greyson was directly exposed by a child in his class, who tested positive for COVID. Great. Turns out (a positive note for living in the middle of Amish country) is that COVID tests are easier to get via a pharmacy, so Roslynn, Greyson and Derek all got tested within 3 days of eachother. Good thing the tests were all negative and the kids could return to school a few days later. I was going crazy trying to work from home, take care of sick kids and get things done around the house, making it nearly impossible to have any down time for my own personal wellness. Out of all three, Greyson definitely got the virus a lot harder than Derek or Roslynn, probably because he gets febrile seizures if his temperature goes above 100.4 degrees (which happened a few times during this sickness).
Since the febrile seizure during his illness, Greyson has been having a very difficult time with behaviors, sleep and seizures. Especially this week, he has had several partial and two tonic clonic episodes, where he has stopped breathing. Fortunately, Greyson’s school has their stuff together and were on top of the tonic clonic seizure he had earlier this week. I received a phone call from the school nurse around 9:45 am, about an hour into my work day, letting me know that Greyson was having a serious seizure at school and was going to be transported via ambulance to the local hospital. I sprinted out the door and was at the school within 5 minutes to make sure he was okay. I walked into the classroom and found it filled with EMS, police and school staff, all tending to Greyson, who was knocked out cold on the floor. Turns out, he went completely limp/droopy on his right side and began to lose his coordination, until he eventually began convulsing on the floor. After 5 minutes, he got his emergency medicine and slowly stopped convulsing after a few minutes. In total, he was actively having a seizure for about 9 minutes, which is long for Greyson. At the hospital, staff and other patients in the ER didn’t really know how to respond to Greyson. It will forever surprise me that a professional medical facility does not have the knowledge or appropriate skills to work with individuals who have severe ASD, intellectual disabilities or behavioral concerns. They checked Greyson’s vitals and waited for him to return to his baseline, then drew some labs to check for anything out of the norm. After a few hours, we were finally able to go home to rest. Though parents of a special needs child never rest.
Battling insurance companies and pharmacies is a skill that both Derek and I are really becoming great at, so we began playing phone tag all afternoon with the neurologist/insurance/pharmacy/ER doc to get a secondary medication for seizures approved and filled. Once evening came, we were still waiting for the neurologist’s office to send the prescription over to the pharmacy. I thought Derek was going to stand at the CVS until the med was filled and in his hands. Luckily, we got the medicine and Greyson started his “emergency” supply, specially authorized by the insurance company because Derek flipped out on them.
All the excitement from the day must have made Greyson extremely hungry, because I sat him at the table and he actually ate something other than chicken nuggets! Though it was only a few bites of ziti, I was so impressed with his table behavior and appetite.
With the end of this ridiculously long week coming to a close, I realized several things. Derek and I are nice, caring and considerate people until we have to team up and be the pushy parents. The second realization is that we moved at the perfect time to the perfect district for the kids, especially for Greyson and the autism program he’s enrolled in. Though we are stressed constantly, exhausted everyday and never have time for ourselves or each other, we really are a force to be reckoned with when it comes to advocating for our kids.
When I sit to write a post, I’m typically doing so while Greyson is napping, or in the middle of one of my insomnia episodes at 2 AM. I have had my fair share of insomnia episodes over the past month, I have not written a post. So much has happened over the past month, I keep waiting for things to calm down before I can process them and put our life experiences into words. Unfortunately, I can’t forsee our lives calming down anytime in the near future, so chaos writing it is.
Well, first and foremost, Roslynn celebrated her 6th birthday on May 29. She finished kindergarten on the 28th, which was the same day as my sister’s wedding. What a week it was! Squeezing one last full week of schooling into two days, a rehearsal dinner, wedding, dance recital AND a birthday pretty much ran us down to empty by memorial day. Roslynn was a flower girl at my sister’s wedding, and I was SO impressed at how well she did at the rehearsal and actual ceremony. She and my niece literally started the dancing at the reception and they were certainly the hit of the dance floor! We had such a great time with friends and family, and my sister looked gorgeous. Greyson was an honorary ring bearer, but because of his epilepsy and severe needs, he stayed home and had a nice mini staycation with his Pappy. I must admit, it was so nice to have time away where Derek and I could act like a couple, and it was nice to feel like a “normal” family, even for just a few hours. I know that sounds like something a parent shouldn’t say, but for Derek and I to have a few hours to not worry about chasing after Greyson, worrying about him having a seizure, or what he has in his mouth, was liberating in a way. I did miss him a lot when we left and checked in regularly with Pappy. He was extremely happy to see us once we got home and could snuggle with him.
Things were going fairly well until the end of May. Greyson started having seizures again the week before the wedding, so his neurologist increased his medications for seizure control. He seemed to do okay for a week or so, but has been having frequent seizures since his initial breakthrough in May. Duke came down with a mysterious infection a few days after we picked him up from the kennel, where we boarded him while we were participating in wedding activities. About a day or so when we picked him up, we noticed his hair was falling out a good bit, but I assumed this was because he had a bath at the groomer before bringing him home. By Friday of that week, I noticed that Duke was really biting/scratching at himself, particularly around his ears and neck. Derek and I determined that we would call the vet on Monday morning and see what the deal was with the itching.
Monday morning came and I called the vet’s office at 9 am when they opened. Well, I called for hours and no messages could be left on the machine and I couldn’t get anyone to respond by phone, via facebook messenger or by email. I later found that the office had been closed due to an emergency, so I had to wait until Tuesday morning. Once I finally got someone on the phone on Tuesday, all appointments were booked until Thursday. At this point, Duke’s neck, left side of his face, eyes and several areas on his body were visibly infected. I tried other vet offices for a sooner appointment, but everyone was booked. I scheduled for Thursday with his vet, but something deep down was telling me not to wait, that this could not wait any longer. After calling around and doing some research, I found a newer emergency curbside vet in Lancaster and gave them a call. Luckily, they could see him that evening, so off he went to the vet. After several tests and observation, the vet was ready to send Duke home with two medications and some follow-up lab work orders to be completed after his medicine was gone. Along with the infected hot spot on his neck, that spread to several parts of his body, he also has a condition in his kidneys that dilutes urine too much. Not sure if there is a cure or what we can do about it at this point, but we will follow-up with the vet once we are finished with the meds. The vet said it was a good idea that we didn’t wait, because the infection could have been much worse by the Thursday vet appointment.
Throughout the entire dog ordeal, my concern was getting Duke back to 100% ASAP. With Greyson having seizures frequently again, we need the dog to show us when Greyson is going to have one, or is having one. We gave him lots of TLC, hugs, treats and let him sleep in the big bed with us until he started feeling better. Though he has many bald spots that have remained on random parts of his body, we are so relieved that he is feeling better and is on the mend.
Greyson continues to have these partial seizures, which seemed to only impact the one side of his face. Up until yesterday, Greyson had not had a full tonic-clonic seizure in a few months and we knew that the partial seizures lasted for a few minutes, but stopped on their own most of the time. Not that they aren’t concerning, but we were getting pretty confident that we knew what to do and how to manage these partial seizures. Last evening however, Greyson had a severe tonic-clonic drop seizure, which is when the person with epilepsy falls mid-activity and slips into a complete state of unconsciousness. This has happened once before to Greyson, back in July of 2019 when we were on our family vacation. He dropped onto the floor while eating chips and went into a full tonic-clonic seizure. Similar to that event, last evening, Greyson also dropped (luckily on the bed, so he was not injured from the fall) and began having a full tonic-clonic episode. The difference with this episode was that Greyson immediately began to turn blue: first in the lips, then his limbs. I knew that this seizure wouldn’t stop on its own, so we gave him the emergency seizure medication. About 20-30 seconds later, he was up and aware of what had just happened.
I continue to glue all of the possible triggers together, so we can avoid or try to help him before these happen, but it seems like a completely different issue each time. Whether it be heat, lights, headache, extreme tiredness, hyperactivity or lack of medicine, the possible triggers are endless. I try to be a patient, understanding and informed parent when it comes to my son’s medical needs and concerns; however, after almost 5 years of medical and behavioral concerns, I am quickly losing hope that we will ever find someone who can truly help us. I constantly remind myself that there are individuals out there that have children who are far worse off than Greyson is, and that we could have it so much worse than we currently do. That is always my drive and motivation to keep pushing on and to fight/advocate for him and his needs. As much as we think we know about Greyson and his conditions, there is so much we don’t know. That’s why it is so important that we keep going, keep pushing and keep the faith, despite it being in low supply at the moment.
As we get closer and closer to settlement and move-in day for our new house, we also get closer to the peak of the summer. I think of how much better things will be for our family once we have space to move around and not be confined to the living room, which serves as our play room, tv room and dining area. Once we survive the hellish heatwave we are experiencing this week, one can only hope that the remainder of the summer is calm, cool(er) and at least a little collected.
Déjà vu. If you’ve ever experienced this, you know that it can be extremely confusing and weird. I have had issues with déjà vu for as long as I can remember. I definitely feel like I get it a lot more often than most people. I always chalked it up to me just being really in-tune with my memory and surroundings. But if you look up why a person experiences déjà vu, you may find the following explanation:
People who are exhausted or stressed tend to experience déjà vu more. This is probably because fatigue and stress are connected with what likely causes most cases of déjà vu: memory.
Totally makes sense! The concept of déjà vu itself is so confusing, but the sensation one feels when they have the “Ah-Ha” moment, is truly unsettling. At least for me. I hate standing in a moment, knowing that I have been in this exact place under the exact circumstances, but not being able to pinpoint where or when I was in that moment. Oh how the brain plays such tricks on us.
We have been living in a déjà vu haze over the past two weeks, when Greyson began having grand mal seizures again. We had a period where things were going really well when he was just on the medical marijuana, but once his most recent EEG showed that he needed to go back on seizure meds, it seemed like everything that was going well, slowly unraveled.
Greyson’s grand mal seizures this time around have changed a lot. His typical tonic clonic seizures began in May 2017 and impacted his entire left side of his body. For those keeping track, that is the side his port-wine stain is on. But if the left side of his brain was impacted by the vascular birthmark, wouldn’t the right side of his body be seizing, not the left? And why does it seem like it’s just the left side of his face twitching, too?
I feel like every spring we jump back about 6-9 months in his progression. Seems that every time the weather begins to get nice, the seizures come more frequently. Greyson’s inconsistent behaviors and the recent increase in seizure activity, always makes me scared to leave him. He spends almost every waking moment on or extremely close by me, even sleeping with me at night so I can wake up and take care of him if he begins seizing at night.
On Saturday, we celebrated my younger sister Becca, who is getting married next Friday. The bridesmaids and some of her friends all got together and we did an Escape room and painted pottery before going out to dinner. It was such a fun time and I had a blast hanging with my sisters and Becca’s friends. I realized that it was my first time in over a year that I had gone out and done anything fun and it was almost two years since I went out for dinner somewhere. I never noticed how much time had passed among the pandemic, the kids, maintaining a house and managing to keep appointments, therapies and everyday functions running smoothly. Looking back, it feels like forever since I was able to relax and enjoy time to myself. And enjoying the day was great, but I couldn’t escape the feeling of being on edge every time I thought of Greyson.
I’m sure I will be even more on edge next week, when Derek, Roslynn and I are at the rehearsal dinner and wedding. Greyson will be in great hands (spending the time with Pappy!), but Duke will be at the kennel and with the increase in seizures, the dog not being around is worrisome. Pappy is great and knows how to do Greyson’s meds if needed, but no matter who he’s with, I always worry about my baby. Regardless, I am hoping we can have some fun, enjoy the evening and relax.
The next few months are going to be crazy busy. We will be moving into our new house in September, and packing up 7 years of stuff from our current home is going to take a lot of time and energy. I am not one to procrastinate, quite the opposite actually, so I anticipate everything will be packed and ready to go by then. I hope. Lots of changes are coming: marriages, birthdays, moving and selling houses, a new school year and hopefully returning to work. I’m hopeful that we can get G’s meds figured out so it’s one less thing to worry about come fall.
In the summer of 2020, we were nominated to have a wish granted from the Make-a-Wish foundation for Greyson. At first, we thought about maybe going on a trip, but with COVID and his seizures not being under control, we decided to askk for something that would last awhile. Greyson has a huge swingset at his Grammy and Pappy’s house, so we already knew that he loved to be outside and loved swingsets. SO naturally, his wish would be a playset of his own for our house.
It felt like forever from the time of initial contact until we were finally picking out a swingset for Greyson. Over the course of a few months and tons of emails/phone calls back and forth, we finally picked a set and had a delivery time frame. Flash forward about 4 months and Greyson’s wish has been granted!
The swingset arrived on Wednesday, April 21st and as soon as it was assembled, Greyson was practically crawling out the door to go play. He has been outside every single day to play on it. We knew he was going to love the swingset, so we are incredibly blessed that the Susquehanna Valley Make-a-Wish was able to grant him this wonderful gift.
Despite a swingset and spending time outside, Greyson has had a tough couple of weeks. He reached his ideal dose of Lamictal shortly after my last post and continued to have issues despite the medication. Due to his frequent seizures while asleep, Greyson began sleeping in bed with me again about 2 months ago. He woke me up on Tuesday last week, with violent convulsions and twitching. Luckily I am a light sleeper and woke up to the movement and was able to monitor him.
On Thursday, Roslynn had a benchmark test for school around 9 am. While she was taking her test, I received a phone call from Greyson’s school, stating that Greyson had fallen asleep after a lengthy seizure and was unresponsive. I jumped in the car and made it to his school within 15 minutes (tyically a 20-25 min drive). When the school staff brought him out to the car, he was accompanied by EMS, the school nurse, his teacher and his personal care assistant. The EMS staff informed me that he was stable and his pulse oxygen level was okay and he was in a deep post-seizure nap (which happens after any seizure of his). I got him into the car and took him home immediately. Derek was working from home that day, so he was able to stay with Roslynn, so that helped me in getting there quickly. Once he got home, I fed him lunch and laid low for the afternoon until his RBT arrived. He didn’t seem like anything was wrong once he woke up, so I was feeling pretty confident that he was not having any issues and was okay to go outside to play.
Greyson wasn’t the only person in the Martin family to have a wish come true this past week. Derek and I began looking for a new house in 2018, mainly due to the fact that we outgrew our house shortly after moving in. Because I lost my job last spring, we put our search on hold until we knew we would be ready to proceed with selling our house and purchasing a new home. We began viewing houses again in early March and by this past weekend, we saw a total of 9 houses and had an offer placed on one, which we lost to another couple who offered more money than we did. I did not feel very optimistic on many of the houses we saw, or the homes that we were finding on Zillow, Realtor.com or from our agent.
Wednesday last week, we were sent a listing for a home in New Holland, PA, which was our ideal location due to the school district of the area. We pulled into a quiet cul-de-sac, tucked in between main street and farmland and immediately were in love with the neighborhood. Expecting to fall in love with the house and to lose it to another bidder, we walked through and confirmed our fate. We peeked around another home in Stevens, PA that we liked as well, but couldn’t get the thought of the previous home out of our minds. We slept on it, and decided to place an offer on the New Holland house. A few hours later, we got a call from our agent and the sellers accepted our offer! It feels like a century since we began looking and now actually having a contract in hand, but we are so excited! We will have plenty of space inside AND outside for the kids, lots of storage and a huge fenced-in yard for the dog! We settle in mid-July and will physically move into the house in September. This gives us plenty of time to do minor things around our current home and get it on the market to sell, too. Guess this was the week for wishes to come true!