New Year, Old Habits

Ringing in the New Year with me, while Derek and Roz slept.

I think it’s safe to say that everyone is happy that 2020 is finally over. With COVID-19, a tumultuous election season and so much going on in the world, 2021 has been warmly welcomed. 2020 was uneventful for Greyson and his medical concerns, up until the very end of November, when he began to have issues with his sleep again. He has been off of seizure medications for a year and strictly only on Medical Marijuana to manage his epilepsy and seizure episodes.

We moved Greyson into the master bedroom right around October due to concerns with his seizure activity at night. I wanted to monitor him more closely and because I don’t sleep very heavily (like Derek does), I thought it would be beneficial for him to be close if something was to happen during his sleep. His medicine was helping with some of the sleep concerns- helped get him to bed sooner, but nothing has helped keep him asleep….ever. He began waking up in the middle of the night in November, popping up from a deep sleep, only to begin screaming bloody murder and thrash his body all around- all while still appearing to be asleep. When he was having episodes like this in the past, we were sent for his first EEG and that’s when the seizures were discovered during his sleep. When he began having these issues, I started to assume that we were going to have to go on seizure medications again.

We discontinued all of Greyson’s medications back in early 2020, so he could have a fresh start and for us to try something more natural with him (medical marijuana oils). For about six months, things were going very well and we (and the school staff) saw a huge improvement in him from the time he was on the anti-consultants. Among the 7 or 8 different meds we tried for his seizures previously, all made him either more aggressive, excessively sleepy/drowsy, or caused him to have serious self-injurious behaviors. Weening him off of the meds was easy and it was almost instantly that we saw the benefits of no medications. When he started showing issues again with his epilepsy, the thought of pumping him with drugs again, was not appealing to us. As time has gone by, we realize that the medicine will do less harm to him than a seizure would. Afterall, it really only takes 1 large seizure to cause serious damage or death.

Roslynn teaching G how to use his new toy tablet

Right after Christmas, I contacted the neurologist to address my concerns with Greyson and a new EEG was ordered. His most recent EEG was a 24-hour EEG in Philadelphia in August 2019, which showed abnormal sharp waves in his left parietal lobe. This wasn’t much of a difference from his previous 24-hour EEG in the Spring of 2019, but did show more evidence of ESES, which is a condition where a person’s brain doesn’t rest and has seizure-like activity constantly through sleep. Not sure if I have talked about ESES before in previous posts, but here is the actual medical definition of it:

Electrical status epilepticus in sleep (ESES) is a childhood-onset epileptic encephalopathy characterized by epilepsy, cognitive regression, and marked activation of epileptiform activity during non-rapid eye movement (NREM) sleep to produce an electroencephalography (EEG) pattern of near-continuous spike-wave discharges.

I had also scheduled an appointment for Grey to follow up with the local Neurologist, to address the concerns and to review the EEG. Luckily, this appointment was scheduled for today, after G had a Tonic seizure on Thursday last week, right after the EEG. This was the first Tonic seizure he has had, unresponsive for about 30-40 seconds and his muscles were extremely tight and he was unable to move, though he did not have any convulsions. Post seizure, he slept for about three hours, which is not like him at all. Seems like good timing for this to happen, as always, since he was seeing the Neurologist this week.

Post seizure nap

Greyson hasn’t been sleeping well, so naturally no one in the Martin house is sleeping well, including Roslynn and Mr. Duke the dog. G was up around 2 am and hung out with me for about two hours, watching Coco and jumping all over the bed. Once I couldn’t keep my eyes open any longer, I sent him to sleep with Derek and I finally was about to get 3 hours of sleep. Prying him out of his sleep to then go to the Neurologist at 10 am was a fun task. We were all pretty miserable and were in desperate need of a nap. Greyson’s schedule was already thrown off for the morning, so when he realized he wasn’t going to school, he was extra grumpy.

CHOP has strict requirements for appointments due to COVID-19, so only Derek could take him to the appointment today, I was phoned in for it. The visit lasted a little over 45 minutes and it was concluded that Greyson will need to be on seizure medications to avoid a possible SUDEP case.

“For some people living with epilepsy, the risk of Sudden Unexpected Death in Epilepsy (SUDEP) is an important concern. SUDEP refers to deaths in people with epilepsy that are not caused by injury, drowning, or other known causes.”

We addressed our concerns about previous side effects with seizure meds and we are willing to give them a chance again. We will begin G on Lamictal shortly, which is proven to show less side effects, especially drowsiness and has even reduced aggressive behaviors in Autistic patients. Here’s to hoping that we can get this under control and get Grey back to a good baseline. We are planning on keeping the medical marijuana too, since it has shown to help his behaviors and self-injury. The doctor also recommended that we do a repeat 24-hour EEG for Greyson and an MRI in Philly. The MRI is to check for any progression in his Periventricular Leukomalacia and any abnormalities that could be contributing to the seizures and migraines.

So 2020 may be gone and in the past, but 2021 begins to show past challenges that we are hoping to tackle head on. Cheers to 2021, to health, to no more COVID and hopefully to no more seizures. Maybe 2021 will bring some sleep, too. LOL!

Hoping to see more of this in 2021!

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.

Evaluation Day

Evaluation Day La Vie de Autism

Evaluation day in Baltimore for a diagnosis of Sturge-Weber Syndrome…..or was it? Follow us on our mini-trip down I-83 to Baltimore, MD where we receive some interesting news about Greyson's condition.
  1. Evaluation Day
  2. A Four Year-Old Birthmark
  3. The Journey Begins
  4. And We’re Live
Evaluation day in Baltimore for a diagnosis of Sturge-Weber Syndrome…..or was it? Follow us on our mini-trip down I-83 to Baltimore, MD where we receive some interesting news about Greyson’s condition.

A “Dig-a-lay-lay” Birthday

Just a quick reflection of this past celebratory weekend……

If you’ve read my previous posts, you know that Derek and I are somewhat decent at deciphering Greyson’s vocal stims. For example, “Uh-DUHHHHHH” means he’s really mad and you should leave him alone and “dig-dig” is typically something funny (it’s turned into more of a “tig-tig” for tickles now). The only stim that we have not figured out is “dig-a-lay-lay”. We did ask how he felt about his birthday on Saturday, which he replied “dig-a-lay-lay”, so hopefully it means something good? HA HA. He’s trying so so so hard to communicate, especially when he is extremely excited or passionate about something.

This past weekend, we celebrated Greyson’s 4 year-old birthday by having two separate family parties. We did it this way due to COVID-19 and not having a large group of family members together. Saturday, his actual birthday, was celebrated with my family, where Greyson had a “Toy Story” themed party. We had only immediate family members (again because of COVID) and it was small, but Greyson had a blast! Greyson woke up on Saturday and was extremely excited. I think he knew that something was up, especially since Roslynn was screaming “Happy Birthday, baby G!” all morning. Once I began decorating with the Toy Story decor, his face lit up immediately. It wasn’t as fun as the Bounce Kraze party we had last birthday, but it was more intimate and it was nice that everyone could talk and hang out.

Low-key decor for the cake table
Giant did a wonderful job on his cake!

Greyson’s favorite part of the day was the balloons. We had a few dozen balloons for him, and he was so excited once Derek brought them into the house. The next 8 hours basically consisted of him wrapping himself up in the balloons and playing with them rather than the toys he received as gifts.

Our birthday celebration continued into Sunday, with Derek’s immediate family, who planned a fun picnic outside for Greyson. Greyson was able to play on his swing set and run around outside, despite the heat and humidity. We had a blast playing and running around, which is his favorite activity. G’s seizures are typically triggered by heat/sun/humidity, but because we discovered this last summer, we were able to spot his warning signs (starting to foam at the mouth and slow down physically), preventing a seizure. I’m starting to think that maybe Greyson even realizes his limitations, because every time he gets overheated, he requests to be picked up and carried inside for water…which he would have never done last summer.

Me, trying to take an artsy photo of Greyson
He takes his sliding-board work seriously
Right before he requested to go inside and cool down

As of today, we are officially at 1,007 days since we began seeking a diagnosis and/or explanation into Greyson’s medical issues. This feels like a lifetime, and we aren’t even close to the finish line. I used to believe that we would have an answer after seeing a few specialists, but it seems like the more specialists we see, the more problems the doctors discover. My personal goal for this year is to stop obsessing over the idea that we will get an answer. This doesn’t mean I am giving up on finding one, but I am slowly coming to the realization that we may never really know all of the answers, and I can’t let it consume me. That’s just something I’m working on accepting.

Looking so serious
I love seeing him so happy
These kids love their snapchat filters
Post birthday parties- both of us are pretty tired!
“Ok mom, stop taking my picture”

A Four Year-Old Birthmark

Evaluation Day La Vie de Autism

Evaluation day in Baltimore for a diagnosis of Sturge-Weber Syndrome…..or was it? Follow us on our mini-trip down I-83 to Baltimore, MD where we receive some interesting news about Greyson's condition.
  1. Evaluation Day
  2. A Four Year-Old Birthmark
  3. The Journey Begins
  4. And We’re Live
La Vie de Autism Live Podcast- 8.7.2020

Audio

The Journey Begins

Narration of my first blog post, dated from June 2018. “The Journey Begins” briefly explains my pregnancy and the birth of Greyson, essentially where our story begins. Enjoy!

Patched

In December 2017, Greyson had bilateral ear tubes put in for frequent ear infections. The tubes appeared to have been working for a few months, but by late 2019, we noticed that he was having frequent infections again. Turns out, Greyson’s tubes never fell out, like they were supposed to, falling into his inner ear canal. Because the body sees the tubes as a “foreign” object, his body began to send white blood cells to his ears to get rid of the tubes, which just resulted in more and more infections, drainage, hearing loss, etc. With both ear drums perforated and his infections becoming frequent in early 2020, we knew by February that he was going to need surgery to correct it. Because of COVID-19, everything with Greyson’s procedure stood still. We were unable to do anything about his ears since Pennsylvania was on an elective surgery restriction. By early May, Greyson’s ears had become so troublesome, that I made an office appointment with his ENT. Dr. Da Costa, the surgeon, agreed that Greyson needed to be sedated for a bilateral tube removal and ear drum patch, to replace the damaged ear drums.

Now, to schedule a surgery for a kiddo at the ENT center, we had to have a pre-surgery clearance appointment (within two weeks of the procedure) with his pediatrician and get the “OK” from her to proceed with the surgery. On Monday, July 27th, I was able to get in with our pediatrician for the pre-op appointment. This was going to be the first time that G was going to be under anesthesia without actively being on an anti-convulsion med for his epilepsy, and due to his most recent seizure, the pediatrician did not feel comfortable signing off on the procedure until she spoke with the neurologist. So, frustrated that we didn’t know what was going on, I was afraid that his procedure was going to be cancelled for August 3rd, which would require a longer wait for G’s much needed relief. By Wednesday morning, we received the clearance for Greyson’s surgery, but only if he could have the procedure done at a hospital, rather than the small outpatient center we typically go to for these types of day surgeries. I received a call from the surgery scheduler at the ENT office and she stated that she had one cancellation for August 5th at Lancaster General Hospital, but if we couldn’t make that work, we were looking into late October for the surgery. I refused to wait that long for Greyson. I knew that once fall comes, he is more prone to getting a cold, which almost always involves some sort of ear infection. We took the appointment for today and were able to get everything sorted out. Our pediatrician also recommended that both Derek and I could attend the day of surgery, since COVID has been restricting companions to 1 per patient. Greyson has been to LGH in the past for ER visits and an EEG in 2017, but never needed sedation for a procedure, so I was a little weary of the hospital, since it’s not necessarily a children’s hospital.

Like our other adventures involving sedation, Greyson almost always was scheduled first thing in the morning, due to his age and having to fast, etc. Today was no different- up at 4:30 am and out the door by 6:30 am. Now, I’ve been to LGH hundreds of times, but again, here I am the evening before, google mapping and street-viewing the parking, entrances, etc. I think my nerves always spark a fear of not knowing where I am going, which is a HUGE fear of mine. Fortunately, I found the parking garage with no issues and we checked in around 6:50 am. Each patient upon parking in the garage, is guided to the information desk for a COVID-19 screening, including a temperature check, symptom checker and questionnaire. LGH has quite the system when checking in for a procedure, so after we got our “screened” stickers, we made our way to the first stop, which was admissions. Being so early in the morning, there weren’t many people checking in, so Derek and Greyson stayed in the hallway, so G could spin and run up and down the halls. Mid way through check-in, I could hear Greyson’s sneakers running up and down the marble hallway, letting out the occasional squeal in excitement that he was out and running around. My faith in LGH was increased when the woman checking us in followed me to Greyson out in the hallway, to put a wrist band on him. She was an older woman, so I didn’t have much hope that she would understand Greyson and his needs, but she was great. She walked us to the elevator, was able to help us carry belongings, while Derek carried Greyson. Expecting her to leave us at the elevator, she accompanied us to the next floor for the pre-op waiting room and introduced us to the staff that would be helping G for the morning. HOLY CRAP a Lancaster County medical facility that had staff who saw our struggling and jumped right in to help. This has never happened for us at a non-children’s hospital.

The greeter assisted us to check-in and pickup our surgery pager and six-digit tracking number for us to check on Greyson’s progress throughout the morning. Though his job was to simply greet us and direct us to another desk, he took us back to a room immediately. HOLY CRAP. Another staff member who saw that we were struggling with an almost four year-old boy and jumped in to help us. I never would have expected this. We were brought back to Greyson’s pre-op room and begun the process of going over medical history, changing him into surgical attire and speaking with the anesthesiologist and eventually the surgeon. Due to Greyson’s allergy to Red Dye #40, we were unable to give him the sedative medication that the hospital carried, so a pharmacist made a special syringe of sedative that was dye-free. Once we administered the medication, Greyson started to feel pretty loopy after about 15 minutes. Because of the red dye hold up, we waited about 1.5 hours total in pre-op, missing Greyson’s surgery start time of 8:30 am by about an hour.

In pre-op waiting for his “happy juice” to calm him
Not liking the strings on his hospital gown

Waiting in the surgical waiting area was like waiting in a busy train station, while attempting to socially distance from other people. Pagers going off every few seconds, notifying family members that their loved ones were finished in the OR, or the lobby phone ringing repeatedly from doctors calling families to explain the outcome of the patient’s procedure. Greyson’s entire procedure lasted about an hour or so. His surgeon came out shortly after we were notified that he was finishing up in the OR and let us know that Greyson did great. We were relieved. Luckily, his ears weren’t too bad- some wax issues in the left ear, which was causing some hearing loss and both tubes just hanging out in the ears. Dr. Da Costa patched both ear drums and we were brought back to the recovery room shortly after speaking with him.

The tracking board, where we watched Greyson’s progress in surgery

Now, I know this entire day sounds relatively normal and boring, but in the true Greyson style, the morning was about to get more…..difficult.

Derek and I predicted that the recovery area would be complicated because of his age and also because of the risk for seizures and self-injury. Our predictions were more than true, especially when recovery called up to the front desk and told the staff to make sure we had Greyson’s helmet. I put up my frizzy, untamed, curly hair and we made our way down to recovery. Precursor for this entire day would have been nice for me to tell you. Because Greyson, Derek, nor I had a COVID test before the surgery (which we were told wasn’t necessary), Greyson was treated as if he had COVID. That means full PPE- two masks, scrubs, dressing over the scrubs, a cloth/disposable covering over the dressing, goggles, a face shield, gloves and shoe coverings. It seriously was borderline the movie Outbreak with Dustin Hoffman. Every person who came in contact with us was required to have the full protective gear on. Once we got into the recovery room, Greyson was in a tiny pod, specifically for kiddos that have had procedures that may be scared or fussy. The pod still opened up to the other recovery beds, which is in an open room with curtains separating patients. Not really conducive for a screaming autistic child.

Greyson was still asleep when we got into the pod, which was just enough room for Derek, Myself and one other staff member. The staff member was in a hazmat suit, almost resembling an astronaut suit, complete with an enclosed helmet with a filtration system attached, so that she was breathing in purified oxygen. I thought it was a little excessive, but then I figured it was better to be safe than sorry. While the anesthesiologist came in to inform us that he did well and she wasn’t anticipating any issues, we received word that his COVID test (they did as a precaution when he was in the OR), was negative. I went over discharge paperwork with a nurse and we were discharged straight from the recovery room, rather than having to go back to the pre-op area due to him being extremely upset and having pulled out his own IV. As soon as we were done going over the information, I trekked down to the parking garage with all belongings in hand and pulled the car around to get Derek and G, who were waiting at the entrance in a wheelchair with three staff assisting. By the look on Derek’s face, I knew that Greyson probably freaked out once I left the room. Greyson was in the hospital pants, a t-shirt and helmet, and was hitting, kicking and headbanging Derek as the staff attempted to help get G under control. Once he was in the car, G began to hit himself, bite his legs/feet and scratch his body. We got him home, fed and put on “Tangled” for him, his latest Disney movie obsession.

The ride home went a little bit like this:

The day was successful, stressful but also relieving to see that the staff at LGH were so accommodating and kind, despite being exhausted, working through a pandemic and having to use extra precaution for each patient. Again, my faith in the hospital system in Lancaster has been restored (for now) and I would highly recommend LGH for any pediatric procedure at this point. As for us, we will manage our still somewhat loopy toddler and torture ourselves by watching his favorite Disney movies this evening, just to keep him happy.