Special needs

Calm, Cool and Collected.

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.

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

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

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

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.

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.

Some birthday and summer fun pics of Roz

DéjàVu

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.

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!

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.

And We’re Live

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La Vie de Autism

The Autism Life