Chances

The past two weeks have been really tough. Greyson has barely slept, which means nobody in the Martin house is resting well, causing lots of grumpy kids. A new nightly ritual is that while we are eating dinner, G will impulsively throw his entire plate of food on the floor and scream bloody murder. He typically runs upstairs to the nursery and has a tantrum for about 1-2 hours until he’s completely worn out.

The lack of sleep is extremely hard on us, both mentally and physically, but I am hopeful that this is just a rough patch. G did see the neurologist last week and they switched when he takes his meds around, hoping to relieve some of his nausea, drowsiness and aggression. Unfortunately, this combination of meds has caused Greyson to become extremely aggressive. The aggression is typically taken out on the dog, then me and Roslynn. The PTSD and severe anxiety from previous attacks, has left Roz completely terrified of G. He utters a tiny whine, and she’s hiding and screaming that he’s “going to get me (her)”. This is really difficult too. It ends up being a vicious cycle: G freaks out, Roz freaks out, G freaks out because Roz is freaking out, causing G to become more aggressive and angry.

So out of it and sleepy

One of the many faces of G

Towards the end of last week, G had run out of 2 of his prescriptions, so we were out of luck. The insurance was holding off on refilling them due to the need of labs and information from the doc before they would approve anything. The few days that he was without any medicine were the best days that he has had in the past few months. Almost immediately after we started up the meds again, Greyson was back to his aggressive self. Every single night since restarting meds, G has been tired, grumpy, aggressive and overall miserable. Derek and I have both been in agreement with this, but we have decided to take our chances.

The thought that Greyson could have a seizure and have serious issues, is absolutely terrifying. As much as I want to feel confident and comfortable with our decisions, deep down I am so scared and worried. Since stopping the meds, he’s been so happy, energetic and sweet. He’s finally smiling, laughing and able to enjoy things like toys and playing with Roslynn.

My happy boy

I try really hard to put myself in Greyson’s shoes. I know that I would never want to be drugged up all day on several meds, crying and screaming because I am so tired and feel awful. The chances of G having a seizure are high without his meds, but having the risk of seizures is much better than the negative side effects from the meds.

Difficult decisions and discussions are expected in a marriage and family. I never expected that we would be making decisions that could impact our baby’s life forever. I certainly hope that we are taking the right chances and making the best decision for him.

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King Size

Greyson has gone from 3 seizure meds, down to 2 in the past month. This transition has caused him to act out, become extremely impulsive, aggressive and nocturnal, though he doesn’t really sleep during the day either.

Derek and I can deal with the lack of sleep, but the aggression is the worst of it. It all started with aggression towards Duke during meals, then during tantrums, but now anytime G is around Duke, he’s biting, hitting, pulling on or trying to tackle him. The aggression then began to target Derek and I, but as former TSS, we can handle anything. When the aggression became centered towards Roslynn, we knew it was best to remove her from the situation, for her own safety.

Nasty bite per Greyson

The hardest decision that we have had to make thus far has been moving Roslynn out of our house, temporarily. My parents have been so incredibly supportive and opened their guest room door to Roz, so she wouldn’t be attacked by Greyson anymore. Watching her curl-up in a corner, violently shaking, crying and screaming “he’s gonna get me, help me mommy!”, was a push over the edge that we needed to make this decision. My parents presenting this offer also came at the best time possible, after an extremely difficult two weeks. I thought that maybe Roz would be upset that she was going to be away from us, but she’s living her best life at Nana/Pop-Pop’s house. The best feature of staying with them, according to Roslynn, is the KING SIZE BED!! She is loving having such a big bed all to herself and is getting some much needed, overdue attention.

Roslynn and I are glued at the hip. She is the baby girl I always hoped for: a 4 year-old little genius with an amazing ear for music. She is so timid and kind, and she has the sweetest little voice and personality. This has been very difficult for us, but especially for me. I truly feel incomplete and empty without her, though I see her every day and call/FaceTime her multiple times a day. Luckily the weekend is coming soon, which means I can stay with her for sleepovers in said King Size bed! This is all temporary, just until Greyson is stabilized on his medications and the aggression has subsided or at least becomes manageable.

Moving onto some more happy thoughts…..

My favorite time of year has finally arrived. I love Halloween, Thanksgiving and the fall. I adore the colors on the trees, the crisp air and the smell of wood burning in a fireplace. This year, Roslynn has chosen to be Snow White for trick or treat night, but that has changed almost daily. Greyson managed to make it to one house last year, before we had to return home due to a giant tantrum. We have stuck with the Star Wars theme for the past two years, but need suggestions for this years costume.

Yoda 2017

2018 Wookie

Roslynn really hopes that he will go as Dopey….though I don’t think G would keep the hat/ears on, or any part of the costume either. Naturally I am so indecisive, so I never know what the kids should go as- suggestions are appreciated!

Getting through this tough time with med transitions, growth spurts, no sleep and full-time work, takes a strong team. Derek and I know how extremely important family is, so we agreed before getting married, that we wouldn’t bring kids into the world if we weren’t prepared to go through it together, for life. I’m glad to say that we are pushing through, as a team, to conquer these rough times. It seems like most parents that have kids with special needs, tend to end up divorced directly because of their child and the stressors that accompany a disability. I see it every single day at work: many families that come in without the other parent being involved, or a nasty custody battle is taking place over the child. It just makes the already difficult situation so much worse. I’m extremely blessed to have such a wonderful husband, family, in-laws and friends, who all support us and provide us with the best opportunities and care for our children. We could never imagine doing this without them!

In the Halloween spirit, I do encourage those not as familiar with the “Blue Pumpkin” initiative, to do some research. The best way we can all learn about those who may be different from us, is by educating ourselves and others. This is how acceptance and understanding becomes contagious. Let’s start a virus of Autism education for those unfamiliar with the condition, and spread the only way to “cure” the symptoms of ASD- acceptance, love, understanding and kindness. Even the smallest gesture goes a far way.

https://www.google.com/amp/s/www.newsweek.com/blue-bucket-halloween-autism-trick-treat-1465718%3famp=1

Happy (early) Halloween, y’all and please send me costume ideas for G!

Keeping the Faith

I have officially turned into an antisocial hermit! Despite my flaws in responding to texts, calls and emails from friends and family, I have become a pro at running on 3-4 hours of sleep per night, juggling a full-time job, managing appointments and services AND (trying) to keep it all together, (which is hard for any parent, let alone a parent of a special needs child.)

It’s so hard leaving them in the morning!

The fall always begins the downward spiral into my winter hibernation mode, which is the hardest season for me. I have an extremely difficult time with the constant darkness, not only because I am blind at night, but I hate the cold, snow and any temperatures below 68 degrees. Fortunately, I was able to survive last winter by relying a LOT on Derek, since he wasn’t working full-time hours. Derek finally got his license and a full-time job! This is his first official salary job that he’s had since we first met, which is a HUGE deal for our family! Though it’s less hours he will be at home, I am so happy that he’s finally found a job that he is passionate about and that he doesn’t dread going to every day.

This past Sunday, our pastor at church delivered a sermon that was especially applicable to our family’s situation. The sermon discussed faith- where it comes from, how it is a personalized experience for each person and how one finds it on their own (or sometimes with help). I’ve never been much of a “religious” person per say, partly because it felt too ritualistic for me, but also because I never fully felt like I was comfortable expressing my beliefs.

Faith isn’t easy to find and it certainly isn’t easy to maintain, especially when life throws trying times at you. In the beginning of our diagnosis search, I had a lot faith. Faith in believing that we would find out what is wrong with G and that we would get the help he needs. Even today, 700 days later searching for answers and enduring no sleep, getting hit, kicked, bit, grabbed and head banged, we still find a way to maintain our faith. It would be a huge lie if I said that there aren’t times where I am so angry at God and myself because I don’t have a “normal” son. I used to pray for the day that we found the right combination of meds for him, hoping I could have a stereotypical “mama’s boy” someday. Yet, our situation continues to get more difficult as Greyson continues to grow and get stronger, and his aggression and temper continue to increase. He is transitioning between seizure meds again, which has proven to be our most difficult struggle at this time, but the sliver of hope that we will find something that works, is what keeps us going. I try to see positives in every single situation possible, but more recently, I’ve been losing that momentum. 3 years of little-to-no sleep, my own medical issues, juggling work and managing a list of weekly appointments, has begun to catch up to me. I attempt to put on a happy face and appear that I have everything under control, but in reality, I am a mess on the inside. The extreme stress of it all is ruining my overall health, my relationships with almost everyone I interact with and has me in a constant state of exhaustion.

700 days of this journey. Even typing it feels overwhelming. I’ve managed to forget my guiding force behind our journey: there are families going through far worse than we are.

I need that reminder tattooed on my forehead or something. We have so much to be grateful for and the sermon from Sunday reminded me of that. We have our difficulties, but our child is physically healthy (for the most part), has happy moments and is the sweetest little boy around. We also have a brilliant daughter who is on her way to become the first doctor in the Smith/Martin/Zanowski/Redcay family line. We also have a dog that literally drives us insane and ensures daily abuse from Greyson, but he continues to adore G and puts up with his aggression to keep him safe. So many blessings we have! We know the hard times are testing, but a daily reminder of the positives, is what will keep our faith, and our fight alive.

Most comfortable pillow, ever.

“Uh-Duhhhhhhhh”!

Derek and I have begun to decipher Greyson’s vocal stims. Luckily, this informs us if he’s happy, sad, angry, or that a tantrum is about to start. He has 3 distinct sounds he typically makes:

“Digdigdigdig a digdigdooo”- he’s happy and wants to play.

“Duka duka duka takaduka”- he is getting upset or needs something.

And finally, the scariest of all stims, “Duh, AH-DUHHHHHH!”- this one typically means that you better watch out because this kid is about to throw a massive tantrum, aggression and all.

Derek and I weren’t sure how Greyson was going to react to this week. He had his first day of school yesterday, had a sedated MRI/MRA today and will have another appointment upcoming on Thursday. Definitely an “Uh-Duhhhhh” kind of week.

We received Greyson’s preschool placement on Friday and he began yesterday morning. He was placed at Reidenbaugh elementary school in Manheim Township, in the IU-13 preschool room. Having worked there for the 2012-2013 school year, I am very familiar with the building and the areas that Greyson would be learning/playing in. Due to our work schedules, Derek would be dropping G off at school, Pappy would pick up @ 11:15 and Roslynn would be with my dad on MWF (her preschool starts in September).

Derek dropped G off at Reidenbaugh at 8:00 am. He was very confused and fussy when he realized he wasn’t going to the typical place (Grammy/Pappy’s House) he has been going for 3 years. Once they got to the special education wing of the school, Greyson was actually excited. He willingly walked into the school, holding his PCA’s (Personal Care Assistant) hand. Much to my surprise, he was happy when Rick picked him up at the end of the first day! Not sure who was more nervous- Derek and I, or Greyson, for him to begin school. It’s extremely difficult to leave your child in the hands of staff you’ve never met, with other kiddos that he doesn’t know.

Waiting to go in the school!

Because he did so well (and I think Pappy really missed him), he had a lunch date with Rick after school at McDonalds. He did great! Probably the 2nd or 3rd time that he’s ever been at a sit-down place for food. Derek and I are hoping that the structured setting of the school will help G become more compliant. At least compliant enough to take him out to do things in public.

Lunch time with Pappy!

Today, we were up at 4 am to head off to Philadelphia for Greyson’s MRI/MRA at CHOP. The drive is typically smooth until we get off of the turnpike at Valley Forge, then we fight traffic until we are in the city. Expecting this, we left about 15 minutes earlier than we needed to, just so we had time to stop if we needed and to fight the bumper-to-bumper Tuesday morning traffic.

Entering the CHOP campus

We made it to the hospital with 7 minutes to spare for parking, security clearance and check-in. I always think that things like this will get easier. The bigger the city, the bigger the risk, the bigger the hospital, but it never does. If you know me, you know that I used to love cities, but now I loathe them. I am a homebody that would prefer to live in the middle of nowhere, with an amazing view of farmland, and no neighbors around for miles. But because I grew up on the outskirts of Lancaster City and with my frequent trips to NYC in my younger years, I am pretty good with navigating my way around. Greyson was blissfully unaware of why were were at the hospital, until we went back to the prep room. That’s when his “white coat” syndrome kicked in.

The nurses and docs knew in advance that G was a complicated kiddo, who hated doctors (rightfully so with how many times he’s been to the doctor in his short 3 years alive). Childlife was present, which was amazing because they helped keep him entertained until the sedation team came in and explained everything to us. Because of his allergy to red dye, the anesthesiologist administered relaxation medication via a nasal spray into G’s nose. This would relax him enough to get his IV in for the actual sedation med.

Side note: I love the YouTube videos of kids who get their wisdom teeth out and are super high afterwards, acting all crazy. Which is exactly the way that G was acting. I joked with the doctors that I needed to take an extra dose home for him, because he was so relaxed and care-free. I had never seen him so loopy.

Once his IV was in, he was sedated with IV meds and was out cold. The doctor said we could expect for G to be in the MRI machine for about an hour to and hour and a half, so Derek and I sat in the waiting room for the procedure. It was fairly quiet, so we were able to make calls we needed to, regarding his schooling and nurse coverage, etc.

90 minutes came and left. I wasn’t getting nervous quite yet, but once 2 hours came, I was getting concerned. I watched other parents go back to their kids in recovery, especially ones that came out to the waiting room well after we did. Finally, the nurses called our name and we were able to back to the recovery room. Greyson was still out cold, and the nurse informed us that he had been in recovery for about 45 minutes, but he needed to have a device inserted in his mouth/throat to keep his airway open, due to severe snoring. The doctor came in a few minutes later, as I was trying to wake G up, and informed us that he definitely should be checked for a tonsil/adenoid removal because of how large they are. (Great, another thing to add to the laundry list of specialists we have to see). I wasn’t surprised because I too had issues with snoring/breathing when I was younger because of the exact same reason.

G finally woke up about 15 minutes later and was still extremely drugged up. Despite a tantrum after removing him from a play car that childlife brought in for him to play with, Greyson did fantastic. CHOP is the way to go for any/all procedures. The drive is a pain, but the care G received was the best we have received yet. They really are a great hospital and go above and beyond for their patients.

The car he played in to pass the time

We got him up and drinking juice, so we were discharged fairly quickly and were on our way. Now the hardest part. We wait. Waiting is the worst of all, but because we did the imaging at CHOP, our new neurologist should be able to read it ASAP and give us results tomorrow or Thursday. Maybe right in time for a great 30th birthday gift, that his MRI/MRA is looking better now than one year ago?

Seriously out cold- could barely get him up!
Also discovered he has 3 chipped teeth- luckily he has a dentist appointment on Tuesday!

A Bounce to Remember

Derek and I wanted to have a birthday party for Greyson, but had very little time to plan one. We searched around places in the Lancaster area that would host a small party (just immediate family), where Derek and I would have little responsibility to set up or clean up. We knew it would also have to be at a venue where the kids could run around and have ample opportunities to let out energy. After budgeting and looking at dates, we settled on BounceKraze to host his party. From previous trips to Hilton Head’s Island Bounce Place, we knew that G loves to bounce and run around. This would be the perfect place to host his party.

Derek and I were responsible for any balloons we wanted (we got a small bundle of them) and a cake. His party this year was pawpatrol but it could’ve been anything and he wouldn’t have cared. We arrived at BounceKraze around 11:30 am, brought in the balloons and cake and Derek and I were officially off the hook for the remainder of the party. Greyson immediate ran to the toddler area, faster than I could take his shoes off, and that’s where he remained for the next 90 minutes.

He had a great time bouncing and only got irritable one time, when I wouldn’t allow him to bring his juice into the bounce house. We also managed to get out of there with one tiny injury between Lexi and Roslynn: they went down the big slide together too closely and bumped heads.

The party room was the perfect size for our small party. Naturally, G was mad because he was now confined to an area, so he was fussy at first but quickly quieted down when he saw the balloons. The party pack we ordered provided 4 pizzas, drinks and chips and Derek and I brought along the cake. Everything was set up and cleaned up and we barely lifted a finger. It was fantastic! The staff was great and our party hostess in particular, was awesome with preparations and making sure G was happy and comfortable. We left the party with 2 extremely sleepy toddlers and 2 extremely satisfied parents.

By the time we loaded the car up with leftovers and presents, G was already out cold.

After a successful party, tired children and a happy birthday boy, we got home and also crashed. I was hoping for a quiet Saturday evening, but the health insurance Gods had a different plan.

The kids had dinner and after our evening bedtime routine, we were watching Daniel Tiger’s Neighborhood to settle in for the night. Greyson caught a second wind and began running across the couch, until his foot slipped and went in between the pieces of the sectional couch. Immediately, Greyson let out an awful scream. Turns out, when Greyson’s foot went into the crack in the couch, his foot was punctured by a piece of metal that holds to sectional pieces together. Once Derek pulled him out of the sofa, he saw a lot of blood. Judging by the amount of blood, I knew he would need stitches. So, like our typical weekends, Derek packed G into the car and drove him to the ER, while I took Roslynn to my parents house (I was NOT bringing her into the ER on a Saturday night).

Once we were seen, the ER doctor confirmed that he needed stitches. If you’ve ever had stitches, you know that the stitches aren’t the difficult part of the process, the needle to numb the area is. Greyson had fallen asleep in the time between the waiting room and the being seen, so G was out cold when they started the procedure. The pinch of the needle sent G into a giant tantrum, which made it extremely difficult to hold him still enough to get him stitched up. Luckily the ER doc was quick and had a steady hand, so the process itself wasn’t too bad, or too long. The Lancaster General Hospital ER on a Saturday evening is always a fun place to sit around and wait, and with multiple traumas coming in, we didn’t get home until after midnight. Both kids were awake when we got home, so it was well after 1:30 until we went to bed.

Waking up this morning, yesterday felt like a dream. Except it really happened, and Derek didn’t freak out with the amount of blood everywhere! We survived our first legitimate injury as a family like pros, guess we have had some practice with emergency situations. I’m really hoping for a boring, uneventful Sunday today. We have our first trip to the main CHOP hospital tomorrow, when we will meet with the neurologist that specializes in genetic abnormalities. Hoping for some more insight and information into Greyson’s genetic condition. We can only hope.

639/1095

Hard to believe that exactly three years ago, my amazingly special little boy was born. 5:03 pm, Greyson graced us with his tiny body and big personality. My birth experience with Greyson was actually peaceful and calm. I had gone into labor naturally exactly 1 week before my scheduled cesarean section and because I didn’t go into labor with Roslynn before my emergency section, I had no idea what to expect.

My section with Roslynn was an emergency due to atypical preeclampsia, so I was really out of it and had zero recollection of signing documents to allow interns into the OR. When it came time to go into the OR this time around, I denied all unnecessary staff/students access to my procedure. It was amazing to have less than 5 people in the room, especially since there were at least 10 in there when I had Roslynn. It was quiet. That’s really the one thing I noticed the most that day- the complete silence in the room. Yes, Derek and I spoke to each other and my doctor spoke with her assistant, but Greyson’s birth was calm, quiet and peaceful. Totally opposite of the 1,095 days to follow.

As you can see, he loved being wrapped up tightly, even snoring away at 3 hours old.

Having our first child 15 months prior to Greyson’s arrival, Derek and I were pros in the newborn baby department. But something with different about G. Countless times I’ve heard the same advice for parents of two (and more) kids- “the older sibling talks for the younger one, so his speech will probably be delayed.” Or, “you can’t compare your kids to each other, they’re all different!”. Or my favorite: “he’s a boy. This is what boys do.” Ok. I get it. But after hearing Roslynn’s cry for 15 months before G was born, I knew something wasn’t right whenever he let out a shrieking scream.

Greysons’s regular “crying” was equivocal to Roslynn’s “I am seriously injured or sick” cry. At all hours of the night (and day) Greyson cried often, and rarely wanted to be held and consoled. We discovered he was an independent (or so he wanted to be) baby, who was ready to conquer the world by 8 months of age. Now, not many people realize this, but in utero, cysts were found in the choroid plexus in his brain. The cysts are one of several flags for trisomy 18, commonly known as Edward’s Syndrome. Luckily, G did not have the other red flags for the condition, nor did he have a positive result when genetic testing was done. Why does this all matter?

If you’ve been following my blog recently, you’ve probably read about Greyson’s recent onset of Grand Mal seizures and several trips to the ER. After 639 days searching for answers, I am becoming more accepting of the fact that we may never truly understand Greyson’s brain, or even have an accurate diagnosis. My birthday wish for Greyson, is that he continues to be a happy, healthy and funny little guy, with a big personality and even bigger head of curls.

Greyson has several upcoming appointments and imaging tests coming up in the next few weeks. He also has his intake at CHOP in Philadelphia, with a doctor that understands his genetic mutation (STAMBP Gene) better than our CHOP neurologist is comfortable discussing with us. But, for the next four days, my goal is to give Greyson the happiest 3rd birthday party he could imagine and allow him to be a typical 3 year old boy. These times are trying, but Derek and I are doing our best with providing the best life possible for Greyson and Roslynn. We can only do this together, leaning on each other, talking to each other about our weaknesses and our accomplishments and by being honest to each other and ourselves when it comes to this entire (long) process. We welcome the challenge whole-heartedly.

Greyson's birthdayOne hour old

The first 24 hours

1st Birthday

Greyson’s second birthday

Stay turned for images from Greysons’s third birthday party!

Motherly Instinct

Whenever I get the chance to speak with other moms who have kids with special needs, I always ask if they knew something was different about their child while they were pregnant. The connection between mother and child, from the first heartbeat, is indescribable. Interesting enough, most mothers day no, that they didn’t feel that anything was wrong until their child was born. Now, they say that redheads tend to be more “in tune” with their bodies (not sure I believe that), but I do recall several times that I felt something was different when I was pregnant with G. Maybe it was the doctor finding cysts on his brain, or the fact that I wasn’t puking all day like I was when pregnant with Roslynn, but I did feel something was off a bit.

Motherly instincts is something that has interested in me since seeing an episode of “Unsolved Mysteries”, one day while I was home sick from school. A segment was done about mothers who had odd feelings about their kids, only to find that they felt these odd feelings at the exact same time a traumatic event was happening to their child. Some of the examples were when a mother was washing dishes and her 6 month-old daughter was silently choking on a small balloon in the living room with her father (who was reading a newspaper). The other example that I remember seeing was when a mother was visiting a friend across town and the mother had a weird feeling about her son, and she called the child’s school and her son had fallen and broken his arm at the exact same time she felt weird. Not saying that all mothers feel “off” when their child has a traumatic experience, but I too have felt these odd feelings on several occasions. The most recent one being yesterday morning.

This week at the Martin household has proven to be the craziest yet. Whenever I think things can’t get more chaotic, the next day typically proves me wrong. Not sure if I was feeling the stress because of work, or if it was the stress of trying to manage G’s appointments, but Monday felt like it should have been Friday. Never a good sign to start the week. Towards the end of last week, Greyson had a medicine increase in his Trileptal, and had a seizure and very difficult day that Thursday. This prompted Dr. Comi to order new imagining, an EEG and labs.

By Tuesday, I hadn’t heard from Kennedy Kreiger’s scheduling office, so I was going to call and schedule the tests as soon as I was home from work. Unfortunately, Greyson was in one of his manic/extremely hyperactive episodes, so the scheduling slipped my mind almost instantly. His behaviors had gotten so bad, that I made Derek take him on a car ride to calm him. Turns out, G just screamed the entire 45 minutes in the car. He did appear a little more calm once they got home and G finally fell asleep on Derek’s shoulder.

About 15 minutes later, I noticed Greyson was moving his mouth in a strange manner, almost like he was trying to talk. I quickly realized that he was going into a seizure.

Naturally, Mr. Duke was all over him. The video shows Greyson seizing on the floor, as Duke barks repeatedly because I told him to back up and give G some space (he didn’t like my request). He ended up coming out of the seizure on his own and slept with Derek for the rest of the evening.

Wednesday we had a follow-up with G’s child psychiatrist and increased his Risperdal dose very minimally, since he appears to be responding well to the dose he was on. His ABA and Special Instructor sessions at the house also appeared to go very well, so I was hopeful for a quiet end to the week. Thursday did hold true to my hopes.

Playing in his ball pit

Friday morning, I woke up at 4:30 am as I always do. I did remember hearing G crying/fussing a bit overnight, but didn’t think much of it. I continued my morning routine, but I had that indescribable “something isn’t right” feeling. I checked the nursery camera and saw that G wasn’t in his crib (didn’t really surprise me since I heard him fussing around 1 am), so I switched to the camera we have downstairs. Derek was asleep on the couch and G was right next to him. I almost switched back over to the news channel I was watching, but I decided to zoom in on G. He was in an odd position- almost sitting up with his face in the crack of the sofa cushions and he was moving in an odd way. I quickly run downstairs and see Greyson having a significant generalized seizure.

Side note, quickly: I only film the seizures if I have another adult with me to assist. We have been asked to do so by the neurologist, so she can see how the seizures are similar and how they can be different.

As you can see in the video, he really was convulsing. I don’t know how long he had been having the seizure before I saw it, but from the time I ran downstairs, until I administered the emergency medicine, it was about 5 mins or so. I truly felt that unless he had his emergency medicine, he wouldn’t have come out of the seizure independently. Luckily the meds kicked in fairly quickly and the seizure stopped. The remainder of Friday was accompanied by aggression, self-injury and lots of crying. By 5 pm, I was dead from the work week and both kids were tired.

The next few weeks will test our patience, as we have several different appointments in Lancaster, Philadelphia and Baltimore. Really praying that we can get some help and get these seizures and behaviors under control.

Stay tuned for updates.