Halloween- also known as “All Hollow’s Eve”, “All Saint’s Eve” or “The Devil’s Holiday”, has many different traditions and meanings among people of faith, different religions and spiritualists. Though the traditions among different faiths and cultures may be drastically different, they all revolve around one main concept- honoring those who died before us. I’ve always loved Halloween and all that is associated with it, including horror movies, caramel apples, apple scented candles and the smell of firewood burning from a neighbor’s chimney. This is the first year that our family did not go trick-or-treating in my parent’s old neighborhood (with exception of COVID ruining all the fun in 2020). For as long as I can remember, we always had a mini Halloween party at my parent’s house, where we would eat spooky themed snacks/foods, take photos of the family in their costumes and then at 6 o’clock sharp, we embarked on the large neighborhood for buckets filled with candy.
As an adult, my love for all things Halloween have stayed the same, but the holiday itself has taken on a new meaning. As someone who has lost someone very close to me over the course of 4 years, I can’t help but to think of the Christian holiday “All Saint’s Day”. When I was in Catholic school as a child, we would choose a Saint to dress up as, and on November 1st, we wore the Saint’s “costume” to school and stood up in front of everyone and said who we were, what we were popular fork, when we became a Saint, and why we chose that particular Saint. I often always dressed as St. Cecelia, the patron Saint of Music- all for the obvious reasons. When it came time for confirmation in 8th grade, I also chose St. Cecelia as my chosen middle name in the Catholic church.
This Halloween evening, I can’t help but to feel especially connected to the Mexican holiday, “Dia de los Muertos”, or “Day of the Dead”. If you’ve seen the movie Coco, you know what the day represents and the core beliefs behind making an alter of gifts and offerings (called the ofrenda in Spanish), to show love and appreciation for those who have passed on. Since I’ve lost my Mother in January, I have thought hard about who and what would be on my family’s ofrenda if I were ever to make one. No, I unfortunately do not have any Spanish lineage, or Spanish blood flowing through my veins, but I have always felt a connection to the Spanish culture and the beautiful language. My ofrenda would be so colorful and would represent the love I have for my family members, especially those who we have lost recently, and would absolutely have Garlic bread on it, but only if it’s burnt (like my dad likes to make it-LOL). I would like to believe that my children would want to honor me after I pass on, too, as a symbol of respect and love. Though I did not make an alter of glorious colors or a loaf of garlic bread, our family celebrated together as best we could. This is the first of the three favorite holidays of my mother’s- Halloween, Thanksgiving and Christmas. The traditions passed down to us from generations before us, have really impacted how we celebrate holidays in our home.
As you can imagine, taking Greyson out trick-or-treating, or anywhere really, is typically a difficult task. We have been trying very hard to take him out places with us, almost doing our own little “exposure therapy” with him, so he can at least tolerate being out among the public. We have recently started taking him to the grocery store, to the local town fair, to different stores and out to do fall things as a family, in addition to trick-or-treating. These little trips begin with 1 adult and his behavior support staff, just in case he throws a tantrum or becomes aggressive. After one or two trips with the behavior staff and parent, we ween out the staff and have just 1-on-1 with Greyson. He especially likes going to the grocery store on Saturday mornings with Daddy, to get donuts for breakfast, and he really enjoyed riding along in the wagon for apple picking.
As we near the end of 2022, I must say that I am SO happy to end this year and welcome 2023. The next few months will bring times of joy, times of sadness and times of hope, but at least I’ll have my family by my side to get me there.
Back in March, we took the kids for their first dental checkup of 2022. At the time, we knew Greyson had a single cavity on the bottom right side of his mouth, but due to his behavior in the office, he was scheduled to have his cavity filled at CHOP in an operating room. After waiting for what felt like forever, Greyson was finally set to have his dental procedure on July 13th. We went into the procedure knowing that he had the one cavity, but had our suspicions about his front left tooth, which was injured in a fall last summer. The plan was for the team to go in after he was sedated, fill the cavity, do a thorough cleaning and check-up, and to get some X-rays, since the images the team got in office, weren’t so great due to Greyson’s behaviors. The entire procedure would last about 30-45 minutes, no problems, in and out quickly.
We left our home around 6:30 am for an 8 am check in, in Philadelphia. The traffic wasn’t too bad surprisingly, but finding a parking spot in the parking garage was a nightmare. Lots of construction in an already highly congested area, made for the WORST as soon as we got into University City. We did the ever so familiar process for checking in, going up to the surgical unit, sitting and waiting for his name to be called, then going back to his patient room. We ended up waiting around a bit in the room. It seemed like the unit was extremely busy and apparently it was mostly dental surgeries/procedures that were being done that day. I was already fairly exhausted after waking up at 4 am, so as soon as we got to a room, I was ready for a nap. We went through the motions of meeting with the nurses, doctors and anesthesiologist (who remembered me from Greyson’s VNS surgery in February-LOL), then waited for the team to bring in the Versed to be administered. We typically have great results with Versed, having used it several times before his other surgical procedures and MRI/CT scans, but this time, the medication didn’t work. This particular medicine is done via nasal spray and is usually fast-acting, but this time, Greyson was still extremely hyperactive and aggressive, even on his way back to the Operating Room.
Derek and I waited in the parent waiting area, where we were anticipating the procedure to be quick and fairly painless, however; after about an hour into the procedure, the lead doctor came out to speak with us. Pulling us aside into a private consult room, the doctor proceeded to tell us that Greyson’s teeth needed a LOT more TLC than initially thought. He not only had the large cavity on his bottom right side, but also several other cavities in between teeth throughout his mouth. He also required two crowns, several caps and multiple cavities to be filled. The icing on the top of the dental sundae, was that he had a genetic mutation, which caused him to have three top front teeth, rather than two. What’s another genetic mutation to add to his already too-long diagnosis listing…..
The doctor stated that the main front two teeth needed to come out, one because there was no room left for them since his additional tooth was already pushing down in through the roof of his mouth. WOOF. Luckily because every other child in the state of Pennsylvania was getting oral surgery done that day, there was an oral surgeon on the premises who was willing to surgically remove Greyson’s third tooth. The doctor showed us X-rays of the tooth and stated it had an abnormally very long root, which was another reason why it needed to be pulled. We agreed with the surgeons that we wanted this to be a one-time thing, so he wouldn’t need to be put under anesthesia again, which they agreed was a good idea. The surgery ended up lasting about 3 hours total, giving me time for a nap for about 45 minutes or so. When his surgery was finally over, the doctors gave us Greyson’s extra tooth (with the long root), and his other one front tooth, for us to keep. It was kinda weird to see how long the extra tooth was, in comparison to his other teeth, but very interesting. He took his good ol’ time coming out of his anesthesia, but once he was up, he was ready to go. Literally, taking off monitors, trying to pull out the IV, etc.
We got in the car and began the drive home. Traffic was a lot heavier getting out of Philadelphia, which surprised me because we were in the middle of the day. We were re-routed through several different areas on the Schuylkill, but finally got back onto the PA turnpike and headed home. His mouth is still healing, but he is sporting a LOT of silver in his mouth, and looks silly with no front teeth. Funny enough, his sister also has two front teeth missing, too- except hers just fell out to make room for the adult teeth coming in.
Since the dental procedure, Greyson has been doing much better eating certain foods and is more willing to eat things that he normally would not have even touched. This is the final week of his ESY (extended school year) services, which means that he will be off from a school setting until he goes back to school, for first grade at the end of August. I am eager to see how he will react once he gets back to the regular, predictable schedule of his normal school days. I for one will be extremely happy that he will be in school again for full days, and that his staff absolutely adore him.
Roslynn is completing her last week of summer school, which was an optional program Derek and I decided to enroll her in, so she could continue her education over the summer. She had previous help in school with her reading and math skills, so we wanted to make sure that she had the concepts and skills fresh in her mind for the next school year, and second grade. She has spent this summer playing outside, playing with her brother and friends, and she attends summer camp every other week for the month of July and first week of August. I have tried to spend as much time as possible with her, doing fun Mom and daughter stuff, since we don’t get much time together alone over the school year. We most recently did a dinner theatre show of “The Little Mermaid” at the Dutch Apple Theatre, which we both really enjoyed! It’s hard to believe that she is going into second grade, and that there are only a few short weeks left in the summer- it always flies by so quickly.
Our family is taking our first post-Covid vacation in August, and I am absolutely terrified of how Greyson will be while we are in a new setting. I have researched all sorts of safety things, ways to keep him occupied in the car for 12+ hours, and what types of accommodations we needed at the house we are staying at. I’m looking forward to late nights out on the balcony, watching/listening to the ocean, and am hoping to find some time to relax and enjoy the week. My family always takes a large family vacation every other year, so this has been long overdue with COVID and my mom’s illness. I am still finding it hard to believe that she will not be on the trip with us (physically at least). The beach was my Mom’s happy place, much like it is mine. It will be weird heading to the beach and not having her there to make fun of me for not going in the ocean past my ankles (sharks, duh), and laughing at me because I hide from the sun (gingers do not like sunlight). I do look forward to relaxing on the beach with the salt water smell in the air, a pina colada in one hand, and a book in the other. This is all hoping that Greyson will be okay in the ocean/pool, if we all survive the car ride there. Fingers crossed!
The past four months have been a complete blur. Truthfully, 2022 in general has been a giant blur. I’ll probably paraphrase much of my life in this post, due to the fact that I can barely remember much that has happened. I will acknowlege that I basically lose my memory when I am stressed, or am in a difficult situation. I definitely think 2022 knocks that one out of the park.
As I wrote about in my previous post, Greyson was recovering well from his VNS implant surgery, and all was going fairly well at first. We noticed he had a lot of vocal stims that almost always happened when the device was actively running. We also noticed that the device also makes him extremely aggressive about a minute or so before the device is on. The first few times we had to swipe the magnet over his VNS, he seemed to respond very well to the intervention. The VNS has appropriately reacted to the seizures, haulting many within one or two swipes. We did two or three in person updates/adjustments with the Neurologist, and the rest of the VNS increases were done remotely, while Greyson was at school.
After about his third or fourth VNS update, Greyson stopped responding to the magnet during seizures. We went from one or two swipes, to four or five and still needing to use rescue medication. One particular seizure at school required all of the above, plus another dose of diastat. When this happened, I made the decision to change either the VNS settings or his medications. Because we were so far along with the VNS settings, we opted to stop his Epidiolex (the CBD based medication) and restart another trial of Onfi. Since weening Greyson off the Epidiolex, he has made a huge improvement on his seizures, not having a grandmal in a few weeks! The only downside to stopping the Epidiolex, is now he doesn’t have much of an appetite. As always though, once he stops having seizures, he doesn’t eat anything. When he’s having daily seizures, he eats everything. We truly can’t win with this kiddo!
Greyson was finally assigned a Registered Behavior Technician (RBT) in mid-April, and we have been SO blessed with such a wonderful team of behavior specialists for him. Our team lead was able to change Greyson’s approved hours, so we have a LOT more coverage over the summer, including when he is at ESY (extended school year) in July. Right now, there are two ladies splitting Greyson’s hours, one main member and an intern. We are doing roughly about 25 hours of behavior interventions with him this summer, more in July once he starts the school program in the mornings.
Roslynn also begins her summer school program at the end of this month. She didn’t fail 1st grade or anything like that, but we had the option of doing a summer program for her, to maintain her skills she has learned over the school year. Luckily her program is virtual, so when Greyson is in person doing his program, I can take her to the local Library and other places to do activities together that we wouldn’t typically get to do.
The conclusion of 1st grade, went out with a bang for Roslynn. We ended up at our local Urgent Care, the evening before the last day of school. She and Greyson were playing in the basement, and Greyson knocked one of our framed photos off the wall. The frame broke and at the same time, Roslynn kneeled down onto the broken frame, slicing a nice hole in her right knee. It wasn’t a huge injury, but enough to require two stitches to close her up. I was making dinner at the time, so I didn’t see the injury actually happen, but she was fairly calm and collected, especially when I told her I was taking her for stitches. She did get fairly dramatic at the Urgent Care, telling the doctor that she was “going to die” in the exam room, and that the doctor was “going to chop her leg off”. At one point, she also stated she couldn’t walk and needed a wheelchair to get out to the car. The doctor stated we were most likely the last patient of the day, and that Roslynn was her favorite person she saw all week. Roslynn did great, taking the numbing agent as a boss, and even watching the doctor stitch up her own leg. I guess it made for a good story on the last day of school.
I am now officially an “as needed” staff at work, so I can focus much of my time this summer on the kids. I went from about 20-25 hours weekly, down to about 10. A big cut, but when you factor in what childcare costs now-a-days, plus hiring a private nurse for G, it really is well worth it. I will go back to part-time in September, and have a similar schedule to what I had previously been working up until now. The best of it all, is that I can sit out on the deck and work on stuff while the kids play in the yard or in the sandbox. I’m also using this time to prepare Greyson for our trip in August. Finding a good form of communication for him, will allow us to have a more successful vacation, hopefully without any injuries or broken items. I am an obsessive planner, so you KNOW I already have a pinterest board of ideas for traveling with a special needs child. Hoping the vacation is more relaxing than work, since we will have zero behavioral help for him during the trip.
Most recently, we celebrated Roslynn’s 7th birthday with friends and family. Sadly, the rain forced many people inside, when we were planning that most of the party would happen outside, but it was a great party regardless. We had a local ice cream truck rented out for our guests to enjoy, rather than doing the traditional cake and ice cream. We did an ice cream themed party, which was a nice theme to kick off summer with. After some spills and a potentially dangerous pinata, the party was a huge success. The ice cream truck was a hit with many guests enjoying the surprise, and we even had some of the neighbors join in on the truck, basically to make up for the fact that we blocked off the entire culdesac with cars and a huge truck. All is forgiven with ice cream in my opinion. My mom would have been so impressed with how far Roslynn has come in a year. She would’ve also loved the rainbow sherbert that the truck offered. I hope that as Roslynn continues to celebrate more birthdays, she will continue with her fun, loving and gentle personality, and will continue to make all of her family, present and passed, proud.
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.
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.
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!