The Unexpected Beach Bum

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.

Greyson and Daddy sitting in the waves

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.

Enjoying her juice while we wait for dinner

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.

It finally caught me

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!

“It’s Just Another Genetic Mutation”

Before the 🦷 came out!

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.

Looking like a big boy waiting for his name to be called

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.

Post surgery

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.

His front left tooth (on the right) and his extra tooth (left) with the extremely long root
Still a bit drowsy from the procedure on the next day

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.

After the show!
Getting Ice Cream at the new Fox Meadows

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!

South Carolina ❤️
Greyson’s ready to pack up for the beach!

Lucky #7

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.

Vaguna Nerve Stimulation- yes, you read that correctly

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
  • Microcephaly
  • 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.

Greyson approves of the new family car

A Wish Come True

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.

Greyson and Roslynn were on the tire swing underneath the slide

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.

Little buddy and I after his post seizure nap

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!

OUR NEW HOUSE!!!!!