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!

VI

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.

The day of his birth, 8-8-2016
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VI

“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!

Holy Spirit, Activate!

In case you’ve been living under a rock and don’t get the title of the post

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.

Calm, Cool and Collected.

He loves his water slide!

When I sit to write a post, I’m typically doing so while Greyson is napping, or in the middle of one of my insomnia episodes at 2 AM. I have had my fair share of insomnia episodes over the past month, I have not written a post. So much has happened over the past month, I keep waiting for things to calm down before I can process them and put our life experiences into words. Unfortunately, I can’t forsee our lives calming down anytime in the near future, so chaos writing it is.

Lexi, Aiden and Roslynn in my sister’s wedding

Well, first and foremost, Roslynn celebrated her 6th birthday on May 29. She finished kindergarten on the 28th, which was the same day as my sister’s wedding. What a week it was! Squeezing one last full week of schooling into two days, a rehearsal dinner, wedding, dance recital AND a birthday pretty much ran us down to empty by memorial day. Roslynn was a flower girl at my sister’s wedding, and I was SO impressed at how well she did at the rehearsal and actual ceremony. She and my niece literally started the dancing at the reception and they were certainly the hit of the dance floor! We had such a great time with friends and family, and my sister looked gorgeous. Greyson was an honorary ring bearer, but because of his epilepsy and severe needs, he stayed home and had a nice mini staycation with his Pappy. I must admit, it was so nice to have time away where Derek and I could act like a couple, and it was nice to feel like a “normal” family, even for just a few hours. I know that sounds like something a parent shouldn’t say, but for Derek and I to have a few hours to not worry about chasing after Greyson, worrying about him having a seizure, or what he has in his mouth, was liberating in a way. I did miss him a lot when we left and checked in regularly with Pappy. He was extremely happy to see us once we got home and could snuggle with him.

Birthday Princess playing pretty pretty princess

Things were going fairly well until the end of May. Greyson started having seizures again the week before the wedding, so his neurologist increased his medications for seizure control. He seemed to do okay for a week or so, but has been having frequent seizures since his initial breakthrough in May. Duke came down with a mysterious infection a few days after we picked him up from the kennel, where we boarded him while we were participating in wedding activities. About a day or so when we picked him up, we noticed his hair was falling out a good bit, but I assumed this was because he had a bath at the groomer before bringing him home. By Friday of that week, I noticed that Duke was really biting/scratching at himself, particularly around his ears and neck. Derek and I determined that we would call the vet on Monday morning and see what the deal was with the itching.

What a sad Mr. Duke

Monday morning came and I called the vet’s office at 9 am when they opened. Well, I called for hours and no messages could be left on the machine and I couldn’t get anyone to respond by phone, via facebook messenger or by email. I later found that the office had been closed due to an emergency, so I had to wait until Tuesday morning. Once I finally got someone on the phone on Tuesday, all appointments were booked until Thursday. At this point, Duke’s neck, left side of his face, eyes and several areas on his body were visibly infected. I tried other vet offices for a sooner appointment, but everyone was booked. I scheduled for Thursday with his vet, but something deep down was telling me not to wait, that this could not wait any longer. After calling around and doing some research, I found a newer emergency curbside vet in Lancaster and gave them a call. Luckily, they could see him that evening, so off he went to the vet. After several tests and observation, the vet was ready to send Duke home with two medications and some follow-up lab work orders to be completed after his medicine was gone. Along with the infected hot spot on his neck, that spread to several parts of his body, he also has a condition in his kidneys that dilutes urine too much. Not sure if there is a cure or what we can do about it at this point, but we will follow-up with the vet once we are finished with the meds. The vet said it was a good idea that we didn’t wait, because the infection could have been much worse by the Thursday vet appointment.

Throughout the entire dog ordeal, my concern was getting Duke back to 100% ASAP. With Greyson having seizures frequently again, we need the dog to show us when Greyson is going to have one, or is having one. We gave him lots of TLC, hugs, treats and let him sleep in the big bed with us until he started feeling better. Though he has many bald spots that have remained on random parts of his body, we are so relieved that he is feeling better and is on the mend.

Best buds

Greyson continues to have these partial seizures, which seemed to only impact the one side of his face. Up until yesterday, Greyson had not had a full tonic-clonic seizure in a few months and we knew that the partial seizures lasted for a few minutes, but stopped on their own most of the time. Not that they aren’t concerning, but we were getting pretty confident that we knew what to do and how to manage these partial seizures. Last evening however, Greyson had a severe tonic-clonic drop seizure, which is when the person with epilepsy falls mid-activity and slips into a complete state of unconsciousness. This has happened once before to Greyson, back in July of 2019 when we were on our family vacation. He dropped onto the floor while eating chips and went into a full tonic-clonic seizure. Similar to that event, last evening, Greyson also dropped (luckily on the bed, so he was not injured from the fall) and began having a full tonic-clonic episode. The difference with this episode was that Greyson immediately began to turn blue: first in the lips, then his limbs. I knew that this seizure wouldn’t stop on its own, so we gave him the emergency seizure medication. About 20-30 seconds later, he was up and aware of what had just happened.

His most recent partial seizure

I continue to glue all of the possible triggers together, so we can avoid or try to help him before these happen, but it seems like a completely different issue each time. Whether it be heat, lights, headache, extreme tiredness, hyperactivity or lack of medicine, the possible triggers are endless. I try to be a patient, understanding and informed parent when it comes to my son’s medical needs and concerns; however, after almost 5 years of medical and behavioral concerns, I am quickly losing hope that we will ever find someone who can truly help us. I constantly remind myself that there are individuals out there that have children who are far worse off than Greyson is, and that we could have it so much worse than we currently do. That is always my drive and motivation to keep pushing on and to fight/advocate for him and his needs. As much as we think we know about Greyson and his conditions, there is so much we don’t know. That’s why it is so important that we keep going, keep pushing and keep the faith, despite it being in low supply at the moment.

Post major tantrum nap

As we get closer and closer to settlement and move-in day for our new house, we also get closer to the peak of the summer. I think of how much better things will be for our family once we have space to move around and not be confined to the living room, which serves as our play room, tv room and dining area. Once we survive the hellish heatwave we are experiencing this week, one can only hope that the remainder of the summer is calm, cool(er) and at least a little collected.

DéjàVu

This kid is a water rat

Déjà vu. If you’ve ever experienced this, you know that it can be extremely confusing and weird. I have had issues with déjà vu for as long as I can remember. I definitely feel like I get it a lot more often than most people. I always chalked it up to me just being really in-tune with my memory and surroundings. But if you look up why a person experiences déjà vu, you may find the following explanation:

People who are exhausted or stressed tend to experience déjà vu more. This is probably because fatigue and stress are connected with what likely causes most cases of déjà vu: memory.

https://www.pennmedicine.org/updates/blogs/health-and-wellness/2019/july/deja-vu

Totally makes sense! The concept of déjà vu itself is so confusing, but the sensation one feels when they have the “Ah-Ha” moment, is truly unsettling. At least for me. I hate standing in a moment, knowing that I have been in this exact place under the exact circumstances, but not being able to pinpoint where or when I was in that moment. Oh how the brain plays such tricks on us.

We have been living in a déjà vu haze over the past two weeks, when Greyson began having grand mal seizures again. We had a period where things were going really well when he was just on the medical marijuana, but once his most recent EEG showed that he needed to go back on seizure meds, it seemed like everything that was going well, slowly unraveled.

Greyson’s grand mal seizures this time around have changed a lot. His typical tonic clonic seizures began in May 2017 and impacted his entire left side of his body. For those keeping track, that is the side his port-wine stain is on. But if the left side of his brain was impacted by the vascular birthmark, wouldn’t the right side of his body be seizing, not the left? And why does it seem like it’s just the left side of his face twitching, too?

The most recent seizure on Friday evening

I feel like every spring we jump back about 6-9 months in his progression. Seems that every time the weather begins to get nice, the seizures come more frequently. Greyson’s inconsistent behaviors and the recent increase in seizure activity, always makes me scared to leave him. He spends almost every waking moment on or extremely close by me, even sleeping with me at night so I can wake up and take care of him if he begins seizing at night.

On Saturday, we celebrated my younger sister Becca, who is getting married next Friday. The bridesmaids and some of her friends all got together and we did an Escape room and painted pottery before going out to dinner. It was such a fun time and I had a blast hanging with my sisters and Becca’s friends. I realized that it was my first time in over a year that I had gone out and done anything fun and it was almost two years since I went out for dinner somewhere. I never noticed how much time had passed among the pandemic, the kids, maintaining a house and managing to keep appointments, therapies and everyday functions running smoothly. Looking back, it feels like forever since I was able to relax and enjoy time to myself. And enjoying the day was great, but I couldn’t escape the feeling of being on edge every time I thought of Greyson.

I blacked out everyone else’s faces because I didn’t ask for permission for their faces to be posted. My sisters can deal with it 🙂

I’m sure I will be even more on edge next week, when Derek, Roslynn and I are at the rehearsal dinner and wedding. Greyson will be in great hands (spending the time with Pappy!), but Duke will be at the kennel and with the increase in seizures, the dog not being around is worrisome. Pappy is great and knows how to do Greyson’s meds if needed, but no matter who he’s with, I always worry about my baby. Regardless, I am hoping we can have some fun, enjoy the evening and relax.

The next few months are going to be crazy busy. We will be moving into our new house in September, and packing up 7 years of stuff from our current home is going to take a lot of time and energy. I am not one to procrastinate, quite the opposite actually, so I anticipate everything will be packed and ready to go by then. I hope. Lots of changes are coming: marriages, birthdays, moving and selling houses, a new school year and hopefully returning to work. I’m hopeful that we can get G’s meds figured out so it’s one less thing to worry about come fall.

Always sporting a Toy Story shirt
Always together
Our new house finally has the SOLD sign up!
His shirt says it all: he’s a happy camper

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!!!!!

Mr. Tickle

An actual story about G

If you haven’t heard the story, Mr. Tickle by Roger Hargreaves, you are missing out. I absolutely love the Mr. Men book series, and this story in particular always reminds me of Greyson, since he absolutely loves tickles. Mr. Tickle also has a way of making everything completely inconvenient for others due to his love of tickling, but luckily for us, I am not ticklish and Greyson likes receiving those tickles. Interesting enough, our pastor recently read Mr. Fussy as part of his sermon a few weeks ago. He used the connection of Mr. Fussy with a gospel reading where Jesus explains to his disciples the outcome of his life. Mr. Fussy loves to be in control of everything and is so particular about every detail of his life, it seems like utter chaos when his cousin, Mr. Clumsy comes to visit. In the true fashion of a person with OCD, losing control of a situation or any hiccup in the person’s “perfect” world, can cause severe internal panic and uneasiness. I know, because my life has been a complete hiccup since Greyson’s diagnosis journey began and you know there’s not enough Sertraline in the world to calm my nerves. Our pastor goes on to discuss how his life is a lot like the life of Mr. Fussy, with the world only feeling content when he is in complete control of it.

Why does this all matter? Well, about a year or so ago, Derek and I were discussing the benefits of Greyson having an iPad with Proloquo on it, to aid in his communication efforts. We both knew a few clients who used Proloquo to communicate with others and express wants/needs, but we knew that we would need a new iPad to run such an extensive app. After months of research and learning about the program, our hopes of getting the program for Greyson was fading, since the iPad, app and case for the tablet would be about $1,000. And who has that kind of money just hanging around? When Derek was at our church recording a worship service, he was voicing to our pastor and his daughter, the program and the possibility of Proloquo helping Greyson and our wonderful congregation pulled together money to provide us with a grant to fund all the necessary items for the program. We purchased the tablet, program and case and programmed the essentials- Proloquo, Disney Plus and Youtube. In Proloquo, you can personalize the buttons to have pictures instead of just words, so Greyson could associate the button with the picture, since he isn’t able to read. I set the photos to all of his commonly requested/needed items: drink, food, Mom, Dad, Roslynn, Grandparents, about 50 different Disney movies and of course, Tickles.

Neither Derek or I knew how to introduce Proloquo to a child since we have no Speech/Language training and have a limited knowledge of sign language, so we brainstormed with his ABA therapist how we were going to use the tablet in his daily sessions. We put the two main reinforcers for Greyson on the main screen, so he could request them whenever he wanted to: Gummy Bear and Tickle. I was optimistic to see Greyson taking to the tablet right away and with some help, was able to push and request to be tickled. Roslynn also got a kick out of showing Greyson how to push the button and get a tickle or gummy bear in response. Soon, this became a daily request/tickle match between the two. I was so excited to see them interact with eachother and it was great to see Roslynn respond to Greyson’s request. We are so incredibly fortunate to belong to such a wonderful congregation that truly cares about each and every person who comes into the church. We have been very blessed with a small, but mighty roster of members and they have been so supportive and amazing throughout our difficulties and our joys.

Vocalizing “Tick” for tickles!!
Lunchtime and getting him used to the tablet

Greyson has been obsessed with corn lately. The people at the grocery store probably think that I am crazy, since I usually am buying 4 to 5 bags of frozen corn each week. He eats one bag of corn each afternoon when he gets home from school, along with his vegetable chicken nuggets. It seems like he always finds a food to become fixated on, it lasts about two or three weeks, then he never touches the food again. We are starting week 3 of the corn obsession, so I will let you know how it turns out. Earlier this year, the school psychologist told us that Greyson was functioning at about a 9 to 12 month level. I never realized how much he had regressed in some of his skills until I was watching him try to eat corn with a spoon. He was making a lot of progress with silverware when he was in early intervention, but over the past year or so, he refuses to try and use it. I was surprised when I put a bowl of corn in front of him with a spoon, and he began to use it.

I sat across from Greyson at the dining room table, teary eyed, watching him eat the corn. Here I am, watching this sweet little boy try so hard to eat with his silverware, but struggling with every scoop of the spoon. I took a short video of him to show Derek, and in hopes that I could find an older video of him using silverware to compare this one with. I wasn’t going to share the video, but I think it’s important to see how much he is struggling with these skills that he once had. I reviewed older videos of him from before he was having seizures, to this video and there truly is no comparison. A 10-month old Greyson was using utensils much easier than the now, almost five year-old Greyson sitting across from me. I figured be had regressed a good bit after the first few seizures, but flash forward 10-15 large seizures later, and he is a totally different child.

Enjoying his favorite veggie

The new seizure meds he is currently taking has been helping a lot when it comes to his daytime episodes. We have noticed his “twitching” when falling asleep has gotten significantly better as well. We are hopeful that once the meds are all leveled out, we will be seeing his verbal communication efforts take off. For now, we will take what we can get, enjoy time together and push forward to the future.

Playing with sissy’s barbies
My beautiful boy

Helmet

Minor Headbanging injury

In the spring of 2018, Greyson was written a prescription for a fitted medical-grade helmet, to keep his head safe from the headbanging he does. In 2018, his headbanging was minimal- typically only when he was mad or upset about something and it didn’t last very long. Fast forward to December 2019 and his minimal headbanging turned into severe headbanging, leaving marks on his forehead, even severe bruising. He began to headbang even when he was happy, which Derek and I assumed was a sensory output that we needed to get under control.

He began to really hurt himself in early 2020, which prompted our doctor to write another prescription for a second fitted helmet (his first helmet had bit the dust in summer 2019). Due to still being employed by WellSpan in January, I was encouraged to go through a WellSpan medical supply company to get his helmet. I contacted their office and had the pediatrician’s office fax over the prescription. We then waited for any correspondance from the supply office, which seemed to take abnormally long. Every time I would call, there were lots of different people I was transferred to, nobody knew the status of the helmet and couldn’t figure out what the hold up was. I had extra time on my hands in early March, after I was no longer employed, so I decided to get mean about the order. I contacted the higher ups from the medical supply company and spoke with the manager of the individual responsible for Greyson’s helmet order. I informed her that I had been calling for over 2 months, trying to get the helmet status and that we were in dire need of the helmet, due to an increase in self-injury. Within an hour, I had a return phone call from the staff responsible for the order. The staff member stated that he had attempted to contact me twice by phone in the past two weeks, which was not true, or else I would have taken his call and had Greyson’s helmet in hand. After voicing my concern and informing the staff that this was a long overdue order, I was taking measurements for Greyson’s new helmet.

Due to COVID19, the supply company was closed to the public. I had received the staff member’s personal cellphone number and had a detailed update when the helmet was ordered, shipped and received. Though I truly try to be level headed and kind, sometimes it does pay off to be nasty, I guess.

The helmet came in on a Tuesday and was picked up by my in-laws the same day (they lived closer to the supply company than we do). Back in 2018 when we were using the helmet for his minimal headbanging, any time we brought the helmet out, Greyson stopped hurting himself almost immediately. But as his self-injury increased, simply showing him the helmet no longer worked. We did not have Greyson wear his helmet at all hours of the day, as he was really only needing it when he was transitioning between activities and when he upset (which is when the headbanging was really happening).

June began with another change in our family’s schedule, I started to work again. Prior to working, I enjoyed three months of being a stay-at-home mom and had both Greyson and Roslynn on a consistent schedule. Greyson’s tantrums had decreased and he appeared to be happy and content with the schedule we had established. When I began working, even though it was part-time from home, Greyson’s schedule was completely thrown off. He no longer had a set breakfast/lunch time and no longer settled for a nap around 11:30am-12pm like he had done for the past 3 months.

Fast forward to this past Thursday. I was feeling really good about scheduling and the tasks of the new position, but I knew that they kids were both having a difficult time with the change. I finished working at 1 pm on Thursday and came downstairs to hang out with the kids and get them a snack. We had no furniture in our livingroom because we had a new sofa set ordered and pending arrival. The kids LOVED the extra space in the room, running around and taking advantage of the empty area. I thought Greyson was pretty low-key and mellow Thursday afternoon, even falling asleep around 3 pm, which wasn’t typical of him. I chalked this up to him being tired and not having a nap yet, so I let him lay down for awhile.

I woke Greyson up from his nap around 5 pm, before I made dinner and he was his typical “threenager” self, not wanting to wake up. Us trying to wake him continued well into dinner, then well into the nightly news. Around 6:45 pm, I told Derek that he (Greyson) had to get up and eat something, since he didn’t have snack for me earlier in the afternoon. Derek sat next to Greyson and began to rub his back, neck and head to wake him up. Startled, Derek jumped up and said that something was wrong with Greyson. I immediately thought that maybe he was having a seizure, so I was surprised that he was awake and walking when I looked up. Derek brought G over to me and told me to feel his head. I did. I was shocked. Greyson’s head felt like Jello. I couldn’t feel any sort of skull. Just softness.

A Pre-Helmet meltdown and this was the result

Being the Queen of WebMD and Google, I looked up “Why is my child’s head soft”, which only returned articles and information about newborns and their soft spots. Having given up on the internet, I called the pediatrician’s office and was connected with the on-call nurse. After she consulted with the doctor on call, the nurse prompted us to take Greyson to the Emergency Room at LGH. An all too familiar feeling, Derek got G ready and I packed up his backpack with the essentials (meds, diapers, etc.). I decided I would stay home with Roslynn, who had already begun to fall asleep and because my immune system is not good and COVID is still lingering, I figured this would be the best option. The next bit of information is coming from Derek, so I’ll summarize what he had explained to me.

They got to the ED at about 7:30 pm and it was packed. Individuals who had symptoms or were suspected of having COVID, were placed in a separate area of the hospital, to avoid contamination with those who did not have a COVID concern. He checked in with the receptionist at the front desk, who knew that they were coming, per our pediatrician calling and informing them. He took Greyson to the section of the ED which was a little more secluded from the rest of the ED and it was easier for Derek to confine him in that spot, rather than letting him run wild among the injured and sick. When they were pulled back into triage, the staff member obtained as many vitals as he could and prompted Derek to bring G back into the lobby area until a room was ready. In the midst of being shuffled around, Derek observed a man getting agitated because his mother was suffering from a stroke and still had not been registered. The man became so incredibly irritated, he did not notice that his mother was taken back at first, and proceeded to take his temper outside to the street. Lime street in Lancaster near the ED is a cute little area, stuffed with different physician and specialist offices, most of whom are affiliated with LGH. In the time we live in, the man became so upset, that he was tackled by police who were called, in addition to the ED security staff. I guess it provided much entertainment for all in the ED, since the area is comprised of nothing but glass windows, facing the area where this man was having his fit.

Once Derek and Greyson were called back to the exam room, the doctor came in and felt Greyson’s skull. He too agreed that something was wrong and that his head should not be swollen and tender like it was. He ordered a CT scan immediately and Derek placed the helmet back on Greyson’s head for safety. Staff came in awhile later and attempted to sedate Greyson with a nasal spray (it worked really well for him at CHOP, so Derek had consented to attempting to try that again. This time however, it didn’t work. The staff placed Greyson in a papoose, similar to what he has at John’s Hopkins when he has laser treatments for his face, and got the images that they needed for the CT scan.

Once we got the helmet, he started to punch and scratch himself in the face

Turns out, due to severe headbanging earlier in the day, Greyson had a huge subdural hematoma between his skull and scalp and a likely concussion. The jello type feeling in his head was collected blood, just hanging out in there. Because his head was not actively bleeding and his brain was not impacted from what the doctors could see, he was sent home. After a follow up conversation with the doctor at the ED and the Neurologist, it was recommended that Greyson now wear his helmet at all hours of the day, whether he is happy or sad, just for extra safety of his head. In the meantime, we have to observe him closely until the hematoma is completely healed, to make sure that he doesn’t have any nausea, vomiting or other complications that accompany a brain injury.

The boys got home around 11:30 pm and I had already been weighing my options when it came to being sure that Greyson was getting the appropriate structure and supervision he needed during the day. I made the difficult decision to step down from my new job and be the stability that Greyson (and Roslynn to an extent) need. Upon submitting my resignation on Friday, the owner of the business I was working for, was completely understanding and as a mother to young children herself, could really empathize with my situation. She stated that due to the situation, I would be able to keep my job within the company, but I would be an “as needed fill-in” until the fall, when I could most likely do the company’s billing and other miscellaneous tasks in the evening, after Derek is home from work. I am so appreciative that I am able to stay on staff there, and hope that once Greyson is back in preschool and stabilized, I may be able to restart my tasks within the company.

I’ve also decided to come out of my “retirement” from teaching voice lessons, and really put my time and attention into that for the evenings. Its a flexible position where I am in control of my own schedule, teaching as many students that I want to. I revamped my marketing skills and reached out to some former students, to see if they would like to study again. Needless to say, I’m thinking I could potentially have a full studio again by the end of summer. I know that this is a good move for our family and will give the kids the attention they need during the day, and still allows me to get out of the house and do something on my own a few nights a week. Contemplating changing my LinkedIn account to “Full-time Mom, Fill in admin staff and optimistic musical entrepreneur” as my current job. Maybe I need to work on that job title a little bit.

Post hospital happy face and happy because our furniture still had not arrived
After work snuggles with the babies