Greyson has always been a difficult eater. I would say “picky”, but I know he likes (or has liked) a variety of foods in the past. Some of these foods include salt and vinegar chips, chicken nuggets and chocolate. Most recently, his food of choice has been Pickle chips (potato chips with pickle flavoring) and white chocolate peppermint candies. The peppermints started after we took the kids to Hershey for the sweet lights and a trip to Chocolate World. Surprisingly, Greyson was able to go on the ride AND sat through the lights very well.
The Hershey “Sweet Lights” is a drive-thru style light show, which syncs up with your car radio. The light display and entire show is several miles long, only a 5 minute drive from Hershey Park. We have done this particular light show several times, which Greyson has always enjoyed. After the lights, I was a bit weary about taking Greyson into chocolate world, afraid that he would be loud and possibly have a meltdown in the large crowds, etc. We had four adults with us, so we decided to bite the bullet and take our chances with the ride. Greyson sat in the front of the 5- person car with Derek and my brother-in-law, and my sister, Roslynn and I sat in the back. I’m not sure if it was the fact that Greyson was sandwiched in between two men, or if he was just confused as to what was going on, but he did a GREAT job! At the end of the ride, we had our photo taken and the kids received a small chocolate bar for going on the “tour” of the factory. Upon leaving the ride, Greyson was very upset that we had to get off of the ride and began to fuss and throw himself down onto the floor. After a few minutes, we decided that it would be best for Greyson and Derek to go out to the car and Roslynn and I stood in line to pay for the chocolate that the kids picked out. Roslynn picked her typical- ice breakers chewy mints and Greyson chose white chocolate peppermint bark bells (the Christmas version of a chocolate bell-shaped candy). He was so excited about these and hasn’t stopped loving on them since!
A small victory of another public outing gone well for us, though it took 4 adults to manage Greyson LOL! We will continue to take him out in public so he can continue to be exposed to other people and settings. Though we don’t have anything “major” planned for 2023, we are looking forward to being able to do more things as a family. Though 2022 began with a huge loss and difficult health issues with family and myself, the year is ending on a positive, optimistic note. My younger sister is expecting her first baby (boy) in 2023 and my dad is able to walk relatively well on his own currently. I have had some important break-throughs with my immune system issues and the kids are loving school and are healthy and happy. Hard to believe 2022 is almost over, but we are hopeful for a happy and healthy 2023 for all our friends and family! Ending my posts for 2022 with some of my favorite photos of the year.
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.
If you have been following me on any sort of social media, you’d know that my family took our large vacation we typically do every other year, to Hilton Head Island, SC. We were able to celebrate Greyson turning 6 years old, even though he fell asleep before we could sing “Happy Birthday” to him. Hilton Head was ALWAYS my Mom’s happy place, so the thought of going without her was enough for me to not want to go on vacation. My Mom was the matriarch of the SmJoMaZaMi (Smith, Joline, Martin, Zawisa and Milligan) family, so making the 12-hour drive and spending a week together, would absolutely feel different and empty. My Mother knew that she wasn’t going to make it on this vacation, despite pushing all of us to book the vacation much earlier than we typically do, but she wanted us to have a relaxing week together. Well played, Mom.
Up until the night before we left for our trip, I was not excited. I am always so excited to go to the beach, as it is the only place I go where I can feel completely at ease with the world. This was a foreign feeling to me during this trip. Even driving down I-95, I had to fight off the sadness and lack of joy to be going to the beach. In my 32 years of existence, I have NEVER EVER felt sad leaving my house, to venture out on a trip to Hilton Head. We left fairly early in the morning (around 2:30 am), in hopes that the kids would sleep until breakfast. Yeah right! Turns out, the kids were so thrown off course, they stayed up until 11 am. I am literally blind when trying to drive in the dark, so Derek ended up driving until the sun came up, about 5 or 6 hours through Virginia. I knew he was tired, so we switched off. Up until this point, I was feeling so run down and exhausted, I had a hard time keeping my eyes open and focused. After about an hour or so of me complaining about how tired I was, Derek agreed to take over driving again, much to his dismay. I slept immediately after, until we were close to Hilton Head. I couldn’t stay awake. The only other time I have ever felt so drained of energy, was when I had mono back in college.
13 hours later, we were finally in Hilton Head. Crossing over the bridge onto the island, I must admit that I did find some spark of excitement through my exhaustion. Stepping into the condo we rented for the week, I saw the amazing view of the Atlantic Ocean, and my heart immediately dropped. The view was worth every dollar spent and every hour stuck in traffic, it was so beautiful. I had planned prior to arriving, what things inside the condo needed to be moved, hidden, blocked and secured. Judging from the photos listed on the VRBO website, I knew exactly what was needed to make sure the owner’s property wasn’t destroyed by Greyson. Things that I never really thought about until I had a child with special needs- remodeling to avoid disasters. I purchased security bars to secure the patio doors, because I knew he would try to jump if he had a chance to. Luckily, we made it through the week with no issues and only a small plastic trash can broken! Images below are the plans I texted to Derek, to avoid serious injury or damage. I will be doing this in the future for any rentals/vacation places we will attend, it really helped ease some anxiety about the trip.
Our first full day of vacation was filled with lots of uncertainties. We were unsure of how Greyson would react to the ocean and pool, how he was going to tolerate being on the sand, if he could keep his swim vest and flip flops on, and how thrown off he would be by having a new routine for only a week. Turns out, we really didn’t have to panic about much at all- Greyson LOVED the water! He spent hours sitting on the beach, right where the water comes up to the shore. He liked being crashed into by waves, and loved splashing around. Derek was able to sit with him and enjoyed spending time with him on the beach. When Greyson would get fussy or irritable, we would bring him up to the pool or up to the condo to take a nap. This typically recharged him for spending the rest of the day at the pool.
Our trip was going fantastic. On Tuesday evening, we went to one of my Mom’s favorite restaurants on the island- Hudson’s. The deck vibe right on the water of the marshland and boats coming in the dock directly after their daily catches, is truly beautiful. When Derek and I went to Hudson’s on our honeymoon, we sat outside and watched the dolphins swim around the water. Though we didn’t see any this time, we did take Roslynn with us and she had a fun time having dinner with just us three.
Wednesday was filled with more beach and pool fun, but I was starting to feel super wiped out again. By the time Thursday rolled around, we had planned on just going to the pool for awhile, since I was exhausted, sunburnt and began feeling feverish. The rest of my extended family went out to Hudson’s that evening for their family meals, but Greyson and I decided taking a nap on the couch for 4 hours sounded better than anything else. By the time I woke up from the nap, I could barely move. I was in physical pain, so so so tired and felt horrible. I have serious sinus/immune system issues, so I chalked all of this up to another sinus infection. My sister, Sarah was out with her fiancé, conveniently at a Barnes and Noble right next to a Walgreens. I asked her to pickup a COVID test for me, just to be safe, though I fully anticipated it being negative. Two and a half years into this pandemic, with a compromised immune system, two school-aged kids who bring home germs, and I managed to avoid COVID, luckily. Unfortunately, this time I wasn’t not so lucky.
As soon as I tested positive for COVID, I immediately notified the rest of the family that I was vacationing with, our on a mask, secluded myself to the master bedroom/bath and pushed through the next 12 hours. When I woke up, I felt even worse. I had ALL of the symptoms: no smell, no taste, fever, body aches, extreme fatigue, horrible headache, runny nose and terrible cough. I lost my voice by the second day from coughing so much and I felt like I had mono and the flu, combined. We made the tough decision to leave early from our vacation. It sucked, yes, but if I was going to have severe symptoms, I needed to be in Pennsylvania where my primary doc is, and closer to home if I needed to go to a hospital. Since having a kid with special needs, I have a good idea of where hospitals are, what insurance will and won’t cover out of state/network and being prepared for anything to happen- all because we never know if or when Greyson will need immediate medical attention.
We packed up the car, the kids and cleaned the condo quickly and were off the island by 11 AM, about 48 hrs earlier than planned. I’m SO happy we left and came home early! By the time we hit North Carolina, I was already having chest/rib cage pain and was having a hard time breathing and staying awake for long periods of time. Let me just give a “shout out” to my hubby, who sucked it up and drove pretty much the entire way to and from the beach. I don’t know what I would’ve done without him! I figured that it would be smart to notify my primary doc, Dr. Miller, to make her aware of my positive test and symptoms. She has been my doctor since 2013, so I absolutely adore her and she truly cares about my overall health. Because of being immunocompromised, Dr. Miller sent an anti-viral medicine, Paxlovid to a 24-hour pharmacy, so we could pick it up as soon as we were back in Lancaster county.
The trip overall was so great, minus the COVID. Sadly, by Friday evening, Derek was starting to show very minor symptoms and I knew the Martin’s were going into quarantine mode for the next week or so. The next day, I was completely exhausted and my cough was getting worse. By lunchtime, I was having a really hard time breathing and was in communication with my doctor regarding going to the ER. Luckily I had my inhalers from my last round of respiratory infections, so they helped immensely. Derek was still experiencing extreme fatigue, body aches/chills, fever and cough and Roslynn began with a cough, too. Covid in a household is truly like dominos- once one falls, they all do. Sadly, I was the first to fall.
My symptoms continued for the next week or so, with breathing still extremely difficult. I had a CT scan scheduled that week for my sinuses, and ended up cancelling due to still testing positive. By then, both kids had minor coughs, low grade fevers and runny noses, and tested positive for covid. We spent the previous week at the beach together, and now we were spending another 7-10 days together with zero help and zero breaks. I was essentially couch-bound due to my cough and fever, but the kids both turned the corner by mid-week. I finally tested negative a few days later, with much relief to me since I had a CT scan I had to get to early the following week. Yes, it sucks that we all had covid and that we were nearly bedbound for over 7 days, but the hardest part of covid in the Martin house, was the fact that Greyson’s in-home therapy sessions needed to be postponed until we all tested negative. Eventually, the kids and I were in the clear, but Derek began with a case of rebound covid. Apparently this is common for patients after they use the anti-viral medications, which Derek and I both had. He took another 2-3 days off and fell into another covid coma for the next two days. Luckily, we all pulled through and made it out to September!
Life lessons learned at the beach were to ALWAYS do research on any place you are staying. Ask for updated photos of the place to look for safety concerns, map out all rest stops (if traveling by car), find the nearest hospital wherever we are staying and buy the extra insurance through VRBO or AirBnB if you’re staying in someone else’s house. May be a few extra dollars, but it truly gave us the peace of mind we needed to survive the week away. Check out more photos from our trip below!
Well, we made it to 6! As of 5:03 PM, Greyson is officially 6 years old. He has grown so much this year- both physically and with skills he has developed. This time last year, we were still having frequent daily tantrums and severe self-injury. This year, he has learned how to use a communication book, point to specific things he wants and has had the least amount of self-injury since he was 2.
The fact that our boy is getting so big, makes me sad because I know we are one year closer to the day we will no longer have Greyson living with us. Now I know all kids with Autism don’t necessarily end up in group home settings, but Derek and I are realistic people and we both understand that there will be a point when Greyson will have many more needs than we can provide. Not to mention the fact that he’s going to be a taller and stronger boy by the time that all happens. We need to be sure we can protect Roslynn and ourselves. Unless there’s a huge medical breakthrough and he is able to control his impulsiveness and aggression, we know he will need to be placed somewhere. That’s for the far future, so we will worry about that bridge once we need to cross it.
This week, we are in Hilton Head Island, for our semi-annual family vacation. We were here last in June 2019 (thanks COVID and Mom’s illness), and are making up for lots of lost relaxation time. So far, Greyson has really enjoyed sitting on the beach, jumping over waves and swimming in the pool. Our first full day down the the beach was yesterday and despite having sunscreen on, and reapplying, Roslynn and I both got pretty severely sunburned. We will most likely go into the plaza today to shop and walk around before we pick up Greyson’s birthday cake for this evening.
I definitely underestimated the strength of the sun here in SC, so taking a small amount of time away from the sun today, is much needed. Looking forward to seeing Greyson dig into his cake and I am excited to see what fun things that his 6th year brings.
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.
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.
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.