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

New House, New School, New Med

There’s never a dull moment in the Martin household. It’s been awhile since I’ve posted- about 4 months to be exact. The summer was filled with complete chaos, packing an entire house, getting the kids set up with their new school, physically moving, remodeling and starting a new job. On top of all that, Greyson began having some pretty serious seizures again.

Part of the reason why we moved to our new town, was because the school district is wonderful for ASD and special needs kiddos. Greyson’s teacher in particular is VERY knowledgeable and has been doing this for some time. She has lots of experience with children who have complex medical backgrounds, behavioral issues and kids that require the specific ABA/Intensive Teaching programs. We went to G’s IEP meeting in August and were very impressed by the district and the special education program and knew that we made the best choice possible for the kids. The kids started school in August and until the end of September, Greyson was really thriving in the classroom and was really enjoying the bus ride to and from school. Because masks are “required” in the district, many children don’t wear them because of “medical exemptions”, which has caused several COVID outbreaks and quarantining for children. Both Roslynn and Greyson started with fevers, sore throats and nasty coughs at the end of September. Within a week, I had two sick kids home from school and a phone call from the school nurse stating that Greyson was directly exposed by a child in his class, who tested positive for COVID. Great. Turns out (a positive note for living in the middle of Amish country) is that COVID tests are easier to get via a pharmacy, so Roslynn, Greyson and Derek all got tested within 3 days of eachother. Good thing the tests were all negative and the kids could return to school a few days later. I was going crazy trying to work from home, take care of sick kids and get things done around the house, making it nearly impossible to have any down time for my own personal wellness. Out of all three, Greyson definitely got the virus a lot harder than Derek or Roslynn, probably because he gets febrile seizures if his temperature goes above 100.4 degrees (which happened a few times during this sickness).

Since the febrile seizure during his illness, Greyson has been having a very difficult time with behaviors, sleep and seizures. Especially this week, he has had several partial and two tonic clonic episodes, where he has stopped breathing. Fortunately, Greyson’s school has their stuff together and were on top of the tonic clonic seizure he had earlier this week. I received a phone call from the school nurse around 9:45 am, about an hour into my work day, letting me know that Greyson was having a serious seizure at school and was going to be transported via ambulance to the local hospital. I sprinted out the door and was at the school within 5 minutes to make sure he was okay. I walked into the classroom and found it filled with EMS, police and school staff, all tending to Greyson, who was knocked out cold on the floor. Turns out, he went completely limp/droopy on his right side and began to lose his coordination, until he eventually began convulsing on the floor. After 5 minutes, he got his emergency medicine and slowly stopped convulsing after a few minutes. In total, he was actively having a seizure for about 9 minutes, which is long for Greyson. At the hospital, staff and other patients in the ER didn’t really know how to respond to Greyson. It will forever surprise me that a professional medical facility does not have the knowledge or appropriate skills to work with individuals who have severe ASD, intellectual disabilities or behavioral concerns. They checked Greyson’s vitals and waited for him to return to his baseline, then drew some labs to check for anything out of the norm. After a few hours, we were finally able to go home to rest. Though parents of a special needs child never rest.

Derek not so happy while talking to the pharmacy, Greyson blissfully unaware

Battling insurance companies and pharmacies is a skill that both Derek and I are really becoming great at, so we began playing phone tag all afternoon with the neurologist/insurance/pharmacy/ER doc to get a secondary medication for seizures approved and filled. Once evening came, we were still waiting for the neurologist’s office to send the prescription over to the pharmacy. I thought Derek was going to stand at the CVS until the med was filled and in his hands. Luckily, we got the medicine and Greyson started his “emergency” supply, specially authorized by the insurance company because Derek flipped out on them.

All the excitement from the day must have made Greyson extremely hungry, because I sat him at the table and he actually ate something other than chicken nuggets! Though it was only a few bites of ziti, I was so impressed with his table behavior and appetite.

Of course I snapped a pic of him eating!

With the end of this ridiculously long week coming to a close, I realized several things. Derek and I are nice, caring and considerate people until we have to team up and be the pushy parents. The second realization is that we moved at the perfect time to the perfect district for the kids, especially for Greyson and the autism program he’s enrolled in. Though we are stressed constantly, exhausted everyday and never have time for ourselves or each other, we really are a force to be reckoned with when it comes to advocating for our kids.

In his element

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

A Change of Plans

The last time I have shared a post, was back in August. Since then, its felt like a year…..at least.

Roslynn has been doing AMAZING in school! We knew that she was extremely smart, but the time it has taken her to grasp concepts (and retain them), has really surprised me. Because our school district’s virtual program it totally ahead of the in-person classroom, I think she will go into first grade ahead of many other kids. She has also begun a musical theater dance class on Wednesday evenings, which focuses on singing, dancing and beginner acting for kids in Kindergarten to Third Grade. She is the smallest (size wise) kid in the class, but she really enjoys interacting with the other kids and it’s a great way for her to express herself outside the house.

Roslynn’s current grades for Kindergarten!

It’s a huge relief knowing that Roslynn has picked up Derek’s love for learning, especially since I did NOT have it when I was her age. I actually only really started liking to learn and pay attention to life, until I was well into my 20’s. I guess having kids does that to you.

Greyson is doing fantastic with school, as well. After being away from school for almost six months, I feared that he would have a difficult time transitioning back into the class. He has had zero issues with transitioning to pre-k again at our local intermediate unit, and he’s been doing fantastic with riding the bus. I love picking him up off the bus because he gives me the biggest, cheesiest smile possible when the driver is turning around in the culde-sac, so excited to come home and play with his sister. We have placed him on a very structured schedule, which has really helped with his behaviors, with exception of Fridays and weekends, when Greyson has a hard time comprehending that he does not have school. I often have to hide his backpack, jacket and shoes, so he doesn’t get triggered by seeing them. We did get word last night that his school is closed until December 1st, due to staffing issues that involve COVID-19. For the next two weeks, I will try my best to teach kindergarten in the morning AND function well enough in the afternoon to do some small table sessions with Greyson. I also have several meetings via Zoom, with both Greyson and Roslynn’s teachers for check-ins. Woof.

I’ve realized while homeschooling Roslynn, that I totally could have been a teacher! I use the school district curriculum as a guide, but I often modify lessons to make it easier for Roz to understand things. For example, she had to do a module about Animal Habitats for Science class. I knew that youtube and looking at pictures was great and all, but for her to truly understand and get the full concept of the lesson, I took her to the zoo, which is located about 45 minutes from our house. We went around and looked at different animals, took photos of their habitats and made notes of what we saw. This really was handy when her habitat project was due. We had a little bit of time left while we were in Hershey, so we went to Chocolate World while we were in town.

Roslynn had been to Hershey’s Chocolate World once or twice before, but she was very small and didn’t remember it. The building itself had changed so much, it was like a new experience from the last time we were there. We went on the factory tour ride, which she had such a blast. I felt so happy that I could do something with her for once, though I wish Derek could have been with us (he was working). I know that we don’t have the opportunity to do much with her, due to the amount of attention Greyson requires. She picked out her own treat while we were in Chocolate World and begs me to go back weekly.

Some photos from our trip
More pics from Hershey and other October photos

COVID-19 is still raging on in the US, so we are still staying home as much as possible…..which means I am still doing mini home projects and miscellaneous re-arranging of cabinets, drawers, closets, etc. My last post documented my painting prep for our powder room, which formerly had HIDEOUS floral wall paper. I finally finished the powder room remodel (we still need a new toilet and lighting fixture), and am really happy with how it turned out. In the past month, I have also rearranged the master bedroom, guest bath, pantry, refrigerator, all kitchen cabinets, laundry room and have been gutting the garage. Keeping busy, so I can do tasks that really keep my mind off of all the recent troubles of our country and world. My other release from the world, is by singing at church. We couldn’t come back as a full choir due to COVID, so we have weekly quartet singers that come in and sing. Each week is a different quartet and I have had a busy time making sure all services are fully staffed and the singers know of the protocol for the Church and the COVID pandemic. Its only a few hours a week, but it really helps me escape the chaotic life we live, and gives me the opportunity to feel “normal” sometimes.

Finished Product

With all the uncertainties of life right now, I totally forgot that next week is Thanksgiving. 2020 has been probably the most difficult year of my short 31 years on earth, but it has also taught me that I have a lot to be thankful for. Though it’s caused us to make a lot of financial sacrifices, I transitioned to being a full-time stay at home mom, something I never thought we would be able to do. I am so grateful to have a husband that supports my decision to continue to stay home with the kids and who supports me during this challenging time in life. I am thankful for my entire family and know that after this year, I will never take a day for granted that I have with my parents, sisters, niece and nephew. I’m hoping to update more often, but things have been so crazy, I haven’t had an extended period of time to sit and write, which I need to commit to. I hope everyone has a wonderful Thanksgiving and stays safe and healthy.

More Fall Fun

“Teacher Mommy”

So much has happened in the past two weeks, that it honestly feels like I haven’t given an update in months….

About ten days ago, the 2020-2021 school year was going to look a little like this- I would homeschool Roslynn for the first half of kindergarten, with guidance from the Penn Manor School District virtual school. Greyson was set to learn from home as well, with a teacher coming out to the house daily to see him, specialists and his classroom teacher doing weekly check-ins and he would receive his ABA services in-home too. This plan drastically changed ten days ago. On Friday, August 21st around 3 PM.

ABA services have been wacky recently, due to COVID-19 and changes with staffing, etc. so I received word that Greyson’s RBT (who had been spending 4 hours a day with us, providing essential services) was moved around to other clients, leaving majority of Greyson’s hours unstaffed. This meant that I was going to be teaching kindergarten from home WHILE watching/tending to Greyson, who really needs one-on-one care 24/7. Derek and I slept on it and after much debating, we decided it would be in Greyson’s best interest to send him back to school. It was such a difficult decision to make and I still wonder to myself if it is a good choice. I must say, Greyson riding the bus from 8:10 and not getting back until 11:50, is a much needed break for me, even if I’m teaching kindergarten at that time. Greyson now will have an opportunity to have his PT, OT, VB and speech in person/at school and will continue to have ABA services from 4-6 PM.

Leaving school after his first day back!
Not sure if he’s happy or annoyed that he has to come home already

We informed his classroom teacher on Sunday, August 20th that Greyson would be returning to the classroom (after telling her for months that he would be home, telling the bus company that he didn’t need a ride and setting up weekly consultations with staff for his check-ins). Luckily, she understood the predicament we were in and after rushing to get papers signed, forms in from doctors, medicine clearances, etc., we were able to send G back to school on Wednesday, the 22nd. In a typical school, there is absolutely no way that would have been done in two days- just goes to show that the IU in Lancaster has great staff members, who don’t mess around! Excitingly enough, he will begin to ride the bus tomorrow. Fingers crossed for a safe, smooth and easy transition into that.

Roslynn had her first day of kindergarten today! It’s hard to believe that she has gotten so big and is already five years-old and in kindergarten. Due to the overwhelming demand for virtual schooling, the school district’s programs for kindergarten and several other grades were not equipped to manage so many online students. While we wait for her modules and kindergarten classwork to be added to her portal, I had to improvise activities for today and most of this week. Now, I DID at one point want to be a teacher, but after working in a kindergarten classroom for a year, I knew there would never ever be a day when you’d see me teaching a class full of kids. It certainly takes a village to raise one child, but boy does it take one hell of a person to teach 20-25 hyperactive children.

As we wait for the school district to get everything together, I will continue to improvise and go with the flow of activities she likes to do, particularly on ABC Mouse and other educational programs. Today for example, I taught her the different between capital and lower-case letters, had her practice writing them with and without composition lines, then got her accustomed to using a mouse and laptop. She only cried once when she had a really tough time clicking and dragging items on the laptop. Overall, I think its going to be a lot of work, but I am hopeful that this is the safest option and it also allows her to work at her own pace, which is always very good for her.

Obligatory “first day of school” photos
So proud of her use of the mouse and touch screen laptop!

Gone are the days that I was able to do small home improvement projects, as I’ve been doing for the past two weeks. I’ve traded in my hammer and paintbrush for a computer and curriculum guide. I’m actually legit proud of myself for doing these improvement projects, mainly things that I’ve wanted to do, but didn’t have the time when I was working full-time.

Painted our front door!
Tore out ugly wallpaper, spackled holes and prepped for painting
Before, with the hideous wallpaper

I’m hoping that I can give Roslynn a positive kindergarten “environment”, even though she is home and that I can live up to the name that she has given me, “Teacher Mommy”. I’m also hoping that the computer system gets its act together soon- one can only make up pretend lesson plans for so long! Sending prayers and good vibes to all those who are homeschooling, or making the hard decision to send their kiddos back to school.

She would prefer to go to school to become a unicorn….

Raincoat

For the past year or so, Greyson has seen a local pediatric dentist, who works for a practice that isn’t the greatest with a non-verbal, autistic toddler. We began seeking a new dentist for him back in the fall of 2019 and were referred to the Penn Medicine Dental Program in Philadelphia. They do many “in home” procedures with laughing gas and they do sedated visits at CHOP, when needed. After the referral was placed, I was able to make sure they accepted his insurance (which had changed since his last appointment due to the loss of my benefits in April), which they did. Roslynn’s dentist (who Derek and I both see, along with the rest of my family) does not accept her new insurance, so I figured we would have her see someone at Penn Medicine too, since we were going to be there for Greyson. Today was the intake appointment for both children at the main campus in West Philadelphia.

The morning began as usual, with the exception that Greyson FINALLY slept in his own bed, for the first time in nearly two years! I was shocked. I woke up this morning, not knowing where we would find him, but I checked the clock at 7:30 AM and there he was, laying in his bed, snuggled under the covers, looking so cozy. I was hopeful that if he got a good night’s sleep, maybe he wouldn’t be a total grump at the dentist. Well, that hopeful thought lasted about an hour, because soon after waking up, he was not happy. Overall irritable, but energetic, so I was super confused. Alas, both kids were up, dressed and ready to go, so I felt like despite his attitude, maybe it would still be an okay trip.

Greyson sleeping in his BIG BOY BED!!!!!
Grumpy Greyson angry that he had to wear actual clothing today
I was convinced we were going to go to the ER instead of the dentist when he pulled this down onto himself…..

After many visits for CHOP for MRIs, EEGs and miscellaneous appointments, I knew that leaving early would be best for the sake of traffic and I always prefer to be early for appointments, just in case. So, like I typically do, I google mapped the location (for the 5th time) and route, along with the nearest parking garages and meter parking availability. I felt pretty confident that I knew where we were going and where to park, so I actually did not feel anxious for a “mini-trip”, like I typically am. That should have been my first warning that the day was not going to go as planned so easily. Greyson, who was the first appointment of the two kids, was scheduled for 1:00 PM and Roslynn was scheduled immediately after, at 2:00 PM. We left the house around 11:00 AM, stopping for gas before hopping on the highway. Roslynn and Greyson both had virtual psychiatry visits this morning at 9:15, and Roslynn was also scheduled for her weekly (virtual) outpatient appointment with her therapist at 11:15 AM. Luckily her therapist was okay with us doing the appointment in the car as we were driving, so Roslynn had her session in the back seat while I drove, Derek navigated and Greyson watched “Trolls”.

At the conclusion of her visit, Roslynn was starting to feel car sick, as she typically does when in the car, so I was giving constant reminders for her to breathe and close her eyes, etc. The GPS was reading an arrival time of 12:53 PM, so I was getting a little nervous that we weren’t going to have much time to get situated before we had to go in for the appointment. We got onto the Schuylkill Expressway and I felt like we were making pretty good time, despite traffic being a little heavy. We soon pass the exit for the Philly Zoo, CHOP and the Philly Convention Center, and I realized that I had never seen signs for Independence Hall before on our trips. The thought then crossed my mind that I had never seen Independence Hall before at all, until it was sitting right in front of me. I still continued to follow the GPS, just assuming that it was taking us on a short cut around construction. I began to get even more nervous when the GPS stated that our “location was approaching on the right side”, and we were sitting in front of a spa, tucked away in a busy city block, far into Center City.

This doesn’t look like the Penn Medicine Dental building

Panicked, I have Derek check the GPS address and he changed the GPS application we were using to good ol’ Google Maps. Turns out, the app we were using (which has never given me any issues before), took us to the other Penn Medicine Dental Program on the completely opposite side of the city. 12:53 PM came and went. I knew we would be really late, so Derek called and informed the receptionist that we were going to be late, to which she responded that we had “15 minutes past the appointment start time” as a grace period to get to the appointment. The GPS, with the correct location this time, was reading 1:10 PM arrival. Whew. I took a deep breath and got us across Philadelphia by 1:08 PM. We made it. I was so relieved. Traffic was getting heavy around the facility and there was no parking available out front of the building, so I dropped Derek and the kids off at the door and circled around the block to find a parking spot. About 20 minutes later, I finally got around the block and found a spot right in front of the building. I pay the $5.40 parking fee for two hours of parking and feel confident that maybe the trip wasn’t going to be a disaster afterall!

The Pediatric Dentistry program waiting room- super cute!!

I quickly go through the security check-in, get my temperature taken and smother Purel all over my hands and arms and join Derek and the children in the waiting room in the pediatric wing of the building. Greyson and Derek went back first for the first appointment. I sat in the waiting room with Roslynn and heard the occasional scream/cry come from the exam room that Greyson was in, so naturally I assumed all was going well. Back story to why I really wanted to find a dentist that could manage an ASD child, was because Greyson injured his mouth/front two teeth back in early 2020, when he head butted the steps the entire way down from the top step, to the bottom (pre-helmet arrival). His front right tooth had been turning a gray-ish color after the injury, so we were really upset that Penn Medicine wasn’t accepting new patients (due to COVID) from March until August. About 30 minutes later, Derek and Greyson come out of the exam room and into the waiting area, and the same dentist took Roslynn and I back to the same exam room.

Before we began with Roslynn’s exam, the dentist debriefed Greyson’s visit with me. Shockingly, Greyson had zero cavities! He did however, have an extra tooth growing in between his front two teeth. The gray tooth is in fact a dying tooth, as we expected. The dentist did not feel like it was necessary to pull the dead tooth at this time, mainly because it isn’t causing him any pain or discomfort at this time, and the dentist doesn’t want to give him anesthesia unless seriously necessary, which we agreed with. I was able to see the x-rays from G’s visit and saw the very crowded front teeth, 3rd tooth and all. Roslynn’s exam was fast and informative. She did great for her x-rays, cleaning and fluoride treatment, giggling at the dentist and dental assistant’s funny jokes the entire time. I knew that Roslynn had a cavity on her lower left side of her mouth, which was visible whenever she opened her mouth wide enough, but I was not prepared to hear that she had 5 additional cavities.

Roslynn has always been a great brusher. Every morning she always brushes her teeth after she is dressed and her hair is done. Evenings, she does need reminders and help with motivation to go into the bathroom and brush well, which she tries to avoid frequently. I would be lying if I didn’t say that I felt like a horrible parent when I heard that she had so many cavities. The dentist assured me that most of the cavities are between her teeth, mainly due to the fact that she has very little enamel on her teeth, which is a common issue with children. Basically any small teeny tiny evidence of a cavity beginning to form, Roslynn gets a full-blown cavity, quickly. The dentist stressed to Roz that she needed to allow us to help with her brushing and flossing. She reluctantly agreed, received her fluoride treatment and we set up her follow-up appointment to come in and have her cavities filled. We made a pit-stop at the bathroom before we began our 1 1/2 hour journey home and made our way to the exit.

I was so excited to show Derek what a great parking spot I got. Since both kids were getting pretty antsy and wanted to go home, Derek was relieved to hear that we wouldn’t have a far walk to get back to the car. We exit the building and I immediately noticed a bright orange piece of paper in the rear windshield wiper blade of my car. I at first believed that someone placed a flyer of some sort on the car, but didn’t see any other cars with any papers on them. As we approached closer to the car, a homeless man walked closer towards us and stated that the Philadelphia parking authority had been by, ticketed my car and marked it for towing. WHAT???!!!! I literally paid for parking, so I was so confused when I pulled the ticket and the bright orange paper off of the car. Having seen the show, “Parking Wars” on A&E, I knew that getting towed in a big city was something that you did NOT want. I quickly tell Derek and Roslynn to hurry up and get in the car, while I skim the car, looking for a boot that would prevent us from leaving. No boot. I thank the homeless man for his information and we pull away before a tow truck could come and move the car. Derek pulls the ticket out of the envelope and the $55.00 fine was written due to parking in an AMBULANCE spot. I honestly checked the signs when I was parking and saw zero signs regarding anything except “two-hour parking” and a loading zone a few feet away. Sitting at the red light feet away from the parking spot, Derek saw an ambulance loading/drop off sign that was in a spot close by the “3-hour handicapped” parking sign that I was looking at when I parked the car. I wanted to get out of the city and be done with the day, so we paid the ticket online and were done with the disaster of a day we had so far.

I swear, I can’t make this crap up. I have the BEST of luck.

Both kids were fairly hungry by 3:00 PM, so we stopped at an exit off the PA turnpike and got them some food. That held their crying over for about 20 minutes, until Greyson began to get fussy from sitting in the carseat. He was screaming and crying his high-pitched squealing cries that Derek and I just love so much. I was hitting some heavy traffic, so I was trying to calm Greyson down verbally, while paying attention the road and other drivers. Roslynn, who was complaining about motion sickness, was screaming for her raincoat, which we brought as a precaution. I asked her why she needed the raincoat, but of course, her anxiety and frustration of being in the car for so long, prevented her from answering me. She continued to scream “raincoat” the rest of the way home, which was about 45 minutes with the heavy traffic.

We got home finally around 5:00 PM, and were greeted happily by Mr. Duke. What a busy day. Both kids are out cold, just as I had hoped they would be. I love looking at them while they peacefully sleep, wondering what their little brains dream about at this age, (hopefully) not knowing the chaotic, challenging and uncertain times we are all facing as a nation. One thing I am certain of though, is I better not hear the word “raincoat” for awhile.