A B(e)acon of Hope

If you’ve been reading previous posts, you’ll know that G’s appetite has come and gone several times over the past year. He’s extremely picky when it comes to textures and hates spicy foods (to which Derek is convinced he’s not his child). It seems that if Greyson eats something he doesn’t like, he will never try that food again, come hell or high water. That is, until he tried bacon.

This kid loves his bacon! Every Sunday while Derek and I are at church, G is feverishly finishing off half a pound of salty, crispy, fried pig. His obsession has become so intense, we now order him pizza with bacon on top. I have even debated buying bacon bits and sprinkling them on everything, just to get this child to eat vegetables or red meat. I am minorly concerned about giving him too much sodium, but I’m just happy he’s actually eating!

This isn’t the beacon of hope that I’ve alluded to in the title of this post. Today was another day, another doctor appointment with little man.

We met with Greyson’s local neurologist in Ephrata for a 3 month follow up. A few weeks ago, I called the neurologist with concern that Greyson’s cyproheptadine was losing its effectiveness for Greyson’s migraines. At that time (about 5 weeks ago), we doubled his dosage from 5 ml to 10 ml. This made G extremely tired and very very hungry. Not sure if it’s the cyproheptadine that surfaced his love for bacon, but he’s put on 5.2 lbs in a little over a month. I think that the bacon is to blame…

The neurologist said everything looks great with G! No seizure activity recently, no motor tics and his headaches appear to be under control. We have blood work to do before our next visit, but he’s in the clear for 6 whole months unless concerns arise! I am so happy that this is one less appointment we will be regularly attending. We will have a follow-up with the genetics team and neurology clinic in Baltimore on the 27th, and hopefully we will know more about what genetically is going on. Hopefully. I’m not sure if I’m ready to face the fact that we really could never know what has caused Greyson’s brain issues. Though I do feel like knowing could also be just as bad as not knowing.

Each month, the admin team at CADD meets for an engagement gathering to discuss ways we can better ourselves as individuals and as a team. This month’s gathering was about finding the positives in all situations, and how negativity and poor attitudes ultimately cause failure and is detrimental to the workplace and home settings. While watching the Ted Talks video, the speaker, Shawn Achor mixes humor with beneficial points about happiness and attentiveness to attitude.

This engagement gathering was particularly interesting for me because I have often struggled with finding the happiness in all situations, especially when you’re an exhausted mother of an autistic child. I wanted to take a tip from the video and find ways to promote my own personal happiness. I have decided that it would be difficult to write or journal about a daily moment of happiness, so I will commit to a weekly moment of happiness. My weekly moment of happiness will revolve around our journey with G and finding happiness in any situation, good or bad.

This week’s moment of happiness was Greyson’s first dance party. Now I cant take credit for this video since I was at work, but I’ve watched it at least a hundred times, and it never gets old. I’ve only seen Greyson dance maybe once for a few seconds… definitely not long enough to catch a video of it. I was extremely grateful that his BT was able to catch it and send the videos to me. See below and tell me that this tops all moments from this week. Maybe even your week. It was a close call between this and him giving me a kiss when I asked for one.

Now, don’t be jealous that you don’t have these moves yet, but hopefully Greyson will be ready to start teaching dance classes once he his age 5.

I encourage all my friends, family and readers to find a moment of happiness from this week and share it with someone else. You’d be surprised at how great you’ll feel after reliving the happy moment in your mind, and being able to put a smile on someone else’s face.

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The Tooth Fairy

For the past 2 months or so, Greyson’s insurance company has been bugging me to take him for his first dental appointment. Coincidentally, I’ve been avoiding taking him for the past 2 years or so. With the amount of specialists we see on a regular basis, I really neglected his “typical” appointments. I finally bit the bullet and scheduled an appointment with a local pediatric dentist. I had a tough time finding a pediatric dentist that accepted G’s insurance, but I finally found one that did, and they were accepting new patients. Score. Unfortunately, I did not read reviews online of this particular practice before our first appointment today.

Now, I am not one to “bash” an establishment, particularly because all practices are different and people have different opinions. So, for the sake of respecting those that enjoy this particular practice, I won’t disclose the name of the group.

Now, if you’ve been reading my blog over the past several months, you know that G is not the type of child that can sit and wait. Our appointment began at 3:30 pm today, so I met Derek there with the kids. I purposely completed the new patient paperwork from the practice’s website and faxed them over in advance, so we could arrive right at the appointment time, rather than 30 mins early, as requested. I did this because I knew that there was no way this kid was going to stay quiet and sitting in one place for 30 minutes. The receptionist confirmed that she had the documents when I received the reminder phone call, and stated that arriving at 3:30 pm was fine. I never really thought that I had to anticipate arrival times and waiting rooms until G came along (and became mobile).

We arrived around 3:20 pm and checked in. Fully expecting to have a quick in and out visit, we didn’t bring a diaper bag (stupid on our part). Now, it was a pediatric office, so luckily he was occupied with toys and books that were available. 3:30 pm came and went and Derek and G were still waiting to be taken back (I took Roslynn home because Duke had to go out and she was getting restless). 3:45, 3:50, 4:00 passed and still, waiting (and running) around the waiting room. Derek was exhausted from running after G, and G was tired of waiting…. and rightfully so.

Waiting to be taken back

Finally at 4:25 pm, they were taken back. After sending several angry texts to Derek about the wait, he informed me that he was taking Greyson back, just as he was going to walk out the door from the ridiculously long wait. I thought to myself, “Geez, if our office made an autistic child wait for over an hour and a half (this includes the time waiting in the exam room for a hygienist), we would have zero clients.” Thankfully Greyson was fairly well behaved and Derek didn’t have too much of a panic attack from chasing him all over. Once the hygienist and dentist came into the exam room, they did a check very quickly in his mouth and BRUSHED HIS TEETH. No, they did not clean his teeth. No they did not polish his teeth. No they did not do x-rays or take any photos of his teeth.

THEY BRUSHED HIS TEETH

Avoiding the chair

Now, again, I do not want to bad mouth another practice, but oh my word. I could have brushed G’s teeth at home for free and without the 2 hour wait! When Derek checked G in, he was told to make a follow-up appointment immediately, before he was even seen. Derek made the appointment for early September, but after the impression we had today (and reading online reviews), we unfortunately will be starting our search again for a pediatric dentist. In an easy world, we would just take him to our family dentist office, but because of his behaviors and lack of patience, we need an office that will sedate him for cleanings. So if you have any suggestions for us, we are all ears for local children’s dentistry offices!

I hope the next few weeks will be anticlimactic. Our next big appointment is on March 27th, when we go back to Baltimore for our final (hopefully) appointment with Dr. Comi and the genetic specialist. As for now, we will take our little man to our own office in the upstairs bathroom, and brush his teeth ourselves….with no wait.

Magic (Greyson) Mike

An evening ritual at the Martin house

Greyson is going to love overalls. At least he better, because he’s going to be wearing them round the clock soon. For about a month now, we have had our evening Magic Mike show, featuring Greyson Michael Martin.

It’s the same routine- come home, change his diaper, eat dinner, watch a show or the news before Jeopardy, then BOOM, strip show. Typically G likes to take off all of his clothes, starting with the shoes and socks. He loathes clothing, especially anything on his feet. Cat & Jack (from Target) is a tag-free clothing line, so we try to stick with that brand to make him the most comfortable possible.

The downside of living with “Magic Mike” himself, is the consequences that come with a naked toddler with ASD and Pica. For those of you that have never heard of Pica, it is defined as:

Craving and chewing substances that have no nutritional value, such as ice, clay, soil, or paper.

Pica is not limited to just the items listed above, it also includes feces, which is our current predicament. I think G realizes that it’s gross after he eats his 💩, but he can’t help but eat it. Derek and I try to change him as soon as we realize (or smell) it, but we aren’t quick enough. Seeing as he apparently only does this at home (for now), I think we may continue to give it a few more months with behavior modification until we raise the concern with a doctor.

Meltdowns are also still part of our nightly rituals, along with a migraine a few times a week. The neurologist wants us to avoid using pain relievers for him, so we started using Gatorade to replace the medicine. So far it seems to work, but I wonder how many bottles of Gatorade we will go through before Magic Mike needs an increase in his medications.

I am so incredibly blessed with a wonderful husband and partner to parent this child, because I could never do it alone. Derek really knows how to calm Greyson and I swear he can read his mind. Since he was a baby, Greyson has been a daddy’s boy. Obviously something is working because Derek walks into a room, and G is automatically happy. It’s really cute.

The latest update on mission “diagnosis” is waiting, again. 440 days into the search and I often feel like we will never find an answer. Especially waiting for the results from the full genetic testing has done nothing but test my patience. I have never been a patient person and nearly throw ahissy fit” when I have to wait for my iPhone to turn restart. Truth be told, I’m not even sure what the genetic testing results will even tell us. We know that epilepsy apparently runs on my dad’s side of the family, but genetic or not, we can’t change our genetic makeup. I’m still not convinced that we will ever find an answer and honestly, I’m becoming more okay with the idea of never knowing.

If there is something that the past 440 days have taught me, it’s that nothing happens quickly in the medical field, and the unknown isn’t the worst thing ever.

“2018: The Terrible, Horrible, No Good, Very Bad Year”

One of my favorite childhood books growing up, was Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. The book (which was later adapted into a movie in 2014) revolved around a little ginger kid named Alexander that was having a pretty crappy day. I would force my mother into reading the book to me during our weekly trip to the Lancaster City library, and despite having read it to me several times, she always obliged. I used to believe that Alexander had a terrible, horrible, really bad day everyday, and that his day couldn’t get any worse. I also used to think I was just like Alexander whenever I was having a bad day…..pretty dramatic for a 5 year-old. And I wonder where Roslynn gets it from.

My 2018 was basically Alexander’s one crappy day on repeat for 365 days, messy red hair and all. Not to be a huge debbie-downer because I had some good times in 2018, but I am not sorry to see it go. As most typically do on December 31st every year, I woke up reflecting upon my year. Reminiscing on 2018 is something I’d like to skip, but all bad things generate a life lesson of some sort. Through my struggles with Greyson over the past year, I have realized that I will never change the past, nor would I want to. His tantrums, inability to communicate verbally and medical issues have only taught me patience and self-advocacy skills for myself and my child. And although it’s taken me 2 1/2 years to feel it, I am finally feeling a connection with Greyson. I melt a little whenever he says “Mamamamamama” on repeat when he wants something.

In terms of advocacy, I was always so afraid of what others thought of us, even dating back to one of my first few blog posts. I was terrified to take Greyson out in public because of the way others perceived me as a parent. 2018 taught me that I can’t control these situations and that I have to let them go. If people judge or stare at Derek and I while we ignore our child’s tantrum, so be it. If people roll their eyes because we have a backpack harness on G, I am happy to tell them the truth- we are working on him walking independently and without eloping from us. I was that parent that didn’t believe in leashes for their kids, but with all the crazies out there snatching up kids, the harness is a safety necessity out in public. Another plus is that G really does enjoy walking and having us not carry him all over the place. Also, I no longer feel afraid to take him out after a laser treatment, terrified of what others may think about his bruises and what remains of his Port-Wine Stain.

Bruises from his treatment done on 12/28/2018

Aside from our journey with Greyson, 2018 has taught me to never take a day for granted, including seeing friends and family members. My family has had a fair share of losses this year, more in the past 7 months than in my entire (almost) 30 years. My grandpa was my biggest fan. He always toted himself around Lancaster, so he could be at my recitals, opera performances and musicals. When we lost him in May, I was devastated. Singing his funeral mass was one of the hardest things I have ever had to do, but it really would have been a dishonor to not give him one final performance to say goodbye. Seven months later and not a day goes by that I still don’t think about him at some point, especially when I’m in the car and Sinatra’s “My Way” comes on the radio.

Seven days after my grandfather’s passing, we lost Aunt Carolyn, my grandfather’s sister. My aunt lived in New Jersey/Florida and most of our communication was via email or Facebook as I got older. “AC” as many family members called her, was always at our large family functions, bringing her fabulous outfits, hair and Jersey accent to Pennsylvania for baby showers, weddings, graduation parties, etc. She always wanted to take jazz piano lessons with Derek via Skype and her love for music also connected us in a special way.

A friend of mine also passed away towards the end of 2018, from a heroin overdose. This friend sang in our church choir and was working diligently on becoming sober when he and I last spoke. This friend’s loss especially hit me hard because he was so young, talented and had an entire life ahead of him. I wish I could see my friend one last time to tell him how much he really mattered to me and many people among the Lancaster area.

Finally, my Uncle Glenn passed away on December 22nd after a long battle with colon cancer. Uncle Glenn always spent Christmas Eve with us and other holidays/birthday parties as of recently. Each Christmas we would do our small gift exchange, which typically involved me giving him a Christmas card with $10-20 worth of PA lottery scratch offs in it. Until I was about 24 year old, Uncle Glenn would give me a different board game for Christmas. First it started out as Chinese checkers (which I had no idea how to play), puzzles, chess and dominoes to card games and “older/harder” logic games. Some years, I would receive the same exact game consecutively. The joys of having siblings meant that I could switch my repeated game with one of my other sisters, who also may have receive a duplicate. As I got older and Glenn finally realized who I was (there are 5 girls in our immediate family after all) and that I was moved out and married, he started giving upgraded gifts: candles, rock gardens, mini fountains and LED candles for my Christmas decorations. Christmas was his favorite time of year and though he didn’t have to get me and my sisters anything, he always had gifts wrapped, with our names (and our kids as we started having them) on each gift. I will miss him the most at Christmas and will miss seeing him walking around Lancaster as I drive home on 999.

With the losses over the year and the hurdles we have jumped over for a clear diagnosis for Greyson, I learned that I can’t take a single day for granted. I may be having my “Alexander” day and think a tough day is the hardest ever, but people aren’t around forever and our kids will never be this small ever again. Live in the moment and make it the best life possible.

With about an hour-and-a-half left in the most terrible, horrible, no good, very bad year, I continue to contemplate my 2019 resolutions. I typically try to set small goals for myself, but I truly believe that this year, I am going forward into 2019 with no resolutions, no reservations and no expectations. I am going to live each day to its full potential, surrounding my beautiful babies, amazingly supportive husband and close-knit family with gratitude and love.

I will close out my final post of 2018 with a few of my favorite photos from 2018. Happy New Year to all of my friends, family and those that read my blog and support me and my family through our daily challenges.

Daddy and G

Rozzie at Christmas brunch with Santa

Greyson eating with a fork!

Artsy B&W of our boy and his birthmark

Roslynn stealing the show at her 3rd bday party

Buzz PJs

Greyson’s first big boy haircut!

Ready for some snow

Our first attempt at an MRI @ Dupont Hospital

Is that genetic?

I feel as though not much has happened since my last post, but thinking back to November 4th, lots of stuff has happened. Derek has just completed his first two classes of his ABA certificate with a 4.0 GPA and I am still addicted to caffeine.

Greyson had a reevaluation in late November for his early intervention services and it was reported that he is functioning at the level of a ten-month-old baby. Imagine having a ten-month-old baby that is mobile….and has just about all of his teeth. Yikes.

It was recommended that we continue his current services until the spring, when we will begin the transition into the IU-13 preschool, particularly the Verbal Behavior (VB) classroom. We were also seen for a post-EEG appointment with Dr. Stein (the local neurologist), and he increased Greyson’s meds and added Cipro, an antihistamine proven to reduce migraine headaches. Until recently, I felt as though the medications prescribed were really helping. Now I can’t tell if the meds need adjusted again or if Greyson is just being difficult in general. Even as I write this, he has just been given his meds and a dose of melatonin. He put Derek and I through a hunger strike due to (what we think) is a sensory issue and has had a regression in his sleep. Greyson not sleeping means us not sleeping.

We saw Dr. Comi in November, which prompted an appointment with a neurogenetic specialist. We had this appointment today in Baltimore at the Kennedy Krieger Institute. After going over family history, questions and concerns, Derek and I had a DNA sample taken via two cheek swabs. Greyson had blood drawn to compare and contrast the chromosomal makeup and genetic map for some more possible answers into his brain issues.

Currently the things we DO know are:

1. Greyson has autism

2. Greyson is currently characterized as being “nonverbal”

3. He has a white matter brain disease

4. He has epilepsy, primarily impacting him while he’s asleep

5. His previous genetic testing (snippet array) showed no abnormalities, but the testing was part of a research study and may not be totally accurate

6. He tested negative for fragile X syndrome

Things we still do not know, but are hoping to have answers to are:

1. What is the underlying cause of Greyson’s autism

2. What are the chances of him being verbal someday

3. What caused the brain disease

4. How do we cure the brain disease

5. What can we do now to help Greyson in the future

We have been searching for the answers to our questions for 407 days and unfortunately do not see them being answered for awhile yet. We have therapies and services in place for G and we have seen him grow a bit since starting them last year, but I still can’t help but feel as though we are still missing something.

My first question to the genetic specialist was “what will this testing show us that we don’t already know? And how will it impact us as a family?” Of course every case is different, but currently there is a 40% chance of the lab finding an issue with Greyson’s genes. If they would find something, Roslynn potentially would be tested as well to see if she inherited anything from Derek or I. Still, that means that there are still more cases in which the doctors don’t find anything, opposed to when they do find something. Makes being optimistic kinda hard, though we will go through with the testing. Derek and I have both discussed this and have agreed that this will be the last round of genetic testing that we will put G and ourselves through. If the results are inconclusive, we will wait a few years and proceed with finding answers.

We also realized that we may never have the answers to our questions. We may never know why Greyson has so many delays and abnormal MRIs and EEGs. Though we would love to have answers so we can better prepare him and ourselves for his future, realistically we must realize that it could potentially never happen. For now, my New Year’s resolution is to stop living in the past and to stop dwelling on our future. There is nothing we could or would have done differently during pregnancy that would have changed the outcomes and we don’t know what the future holds. We don’t know what medicine and science will look like tomorrow, let alone 10+ years from now, so we must stop dreading it and hiding Greyson from the world.

So, as we close another year, perhaps the most difficult year of my 29 years thus far, we will not look at this time and wish we could change the past. We will live for today and celebrate the little things in life, especially Greyson’s smallest successes.

Ps- Derek might kill me for posting this, but look how happy G looks. Melts my ❤️.

Halloween Mask

A few days late, but happy halloween! This year we kept on with the Star Wars theme and Greyson went as Chewbacca (he was Yoda last year). Despite having several costumes, and changing her mind daily, Roslynn decided to go as Vamperina. Halloween last year was fun, G only made it down the walkway at my parents house before he freaked out, so he stayed back and gave out candy while Derek and I took Roz around the neighborhood.

This year, we came equipped with the double stroller and supplies to keep G happy while we walked around. Unfortunately, he only lasted two houses before he had a meltdown, so I took him back to my parent’s house and let him run around.

Little chewy

An hour or so later, Roslynn and Derek returned to the house with two giant buckets filled with candy. Luckily, Roslynn was a nice big sister and shared some of her treats with Greyson.

Aiden, Alexa and Roslynn dressed up

I’m thinking next year, it may be smart to take G to a sensory friendly trick or treat someplace, just so he can experience the fun too.

Greyson’s true Halloween mask came on Friday, when he had another laser treatment in Baltimore. We woke up extra early on Friday because Starbucks was giving away reusable holiday cups with a holiday drink and I was not missing that, so we had to stop before we got the road to Baltimore. Roslynn accompanied us to Baltimore this time, but I kept her in the waiting room to avoid having too many people in the procedure room. We finally got on the highway around 8:10 for a 9:30 procedure, so I knew I would have to make good time for us to get into the city, fight through traffic, find a parking spot and check in. Fortunately, the parking spot we found was right next to the entrance to the children’s dermatology hospital, so I knew Jesus had my back.

We checked in and they immediately took Greyson back. Roslynn and I used the restroom and as soon as we finished, Greyson was done. I could hear him coming down the hallway, screaming and crying as Derek carried him over his shoulder. At the time I was only focusing on checking out and getting back on the road, so I didn’t notice the bruising on G’s face until we got out of the parking garage.

Zonked out after the procedure

I think it looks a lot worse than it probably feels. We give G a dose of Valium to calm him and he receives a hefty duty numbing agent on his face, so he doesn’t feel any pain from the laser. Once we got home, G was still pretty grumpy and tired from the Valium, so we let him rest.

I received a phone call from our pediatrician when we got home. She stated that she spoke with Dr. Stein (local neurologist) and they agreed not to increase G’s Trileptal, but they both recommended a trial of Cyproheptadine, which is commonly used as an antihistamine. After looking into the drug, I read that other uses for the medicine was to assist in weight gain, makes the patient drowsy and less-likely to have insomnia at night and also to prevent cluster headaches or migraines. Migraines have been a concern of ours for over a year, so we were very relieved that we finally had a doctor that listened to us and is willing to try something else than Motrin or Tylenol. We started the medication on Friday night and Greyson finally slept through the night for the first time in months. He also seemed to have an appetite again on Saturday, after barely eating and living off pediasure for the past month. He was not fussy at all this weekend, with exception of when he was hungry and cried because he wanted food. Things finally seem to be falling into place. I don’t want to speak too soon, as we know that one step forward is often three steps back, but we want to remain optimistic.

The next challenge we will work on tackling, is the loss of daylight savings time and how the dark afternoons impact our children and us.

Day 2 bruising- it should lighten up over the next week

Super Glue

Greyson was scheduled for a 48 hour EEG in the pediatric wing of York Hospital on Monday. Check-in was set for 7:30 am and we had about a 45-minute drive to the hospital. Luckily, I packed Greyson’s bag, favorite blanket, toys and cozy PJs up on Sunday evening, so we were ready to grab and run on Monday morning.

First of all, I hate driving on route 30 and 83 during rush hour traffic. The commute was expected to take about 45 minutes but ended up taking an hour because of traffic and the ridiculous construction at the main entrance of York hospital. The vallet parking crew was nowhere to be found, so I feel dropped Derek, Greyson and the bags off at the front entrance and parked the car in the nearby garage. I was already annoyed because Derek had misplaced the directions with where we were to go to check-in, so the fact that we were running behind and parking was a nightmare, didn’t help at all.

Once I rejoined Derek and G in the lobby of the hospital, we made our way through the building to the EEG/MRI department. We checked in and we’re promptly taken back to a room with a huge air duct, connected to a machine and leading out of the one small window. Initially, I thought this was the room we were spending 2 days in.

25 gold plated electrodes were super glued to Greyson’s head. My boy’s beautiful curls were brushed out and smothered in super glue and wires. He never lets me brush his hair, so you can imagine how great it was for him to lay on a table and have someone mess with his head for 30 minutes. Greyson was a mess. He began to scream and cry so much, that he eventually cried himself into a comatose state. Through our journey this far, we have become accustomed to G screaming and fighting us at appointments and procedures, but I had never seen him fight this hard. Once the tech completed hooking up the EEG and wrapping Greysons head like a mummy, we were on our way to the pediatric wing.

We got settled in a small room on the peds wing and a camera was turned on to film Greyson for the next 48 hours. Almost as soon as we were settled, nurses and staff were coming in to help us feel comfortable, and to assist us in ordering some breakfast (we were all fairly hungry since we were in a hurry to get to the hospital). Immediately after eating some toast, Greyson zonked. Lunch came and went and still, Greyson was laying face down on the hospital bed, covered up with his favorite blanket. I’m assuming he had been exhausted from fighting and crying so much when placing the electrodes because he ended up sleeping for 3 hours….which gave me plenty of time to take a nap as well.

Once Greyson woke up from his slumber, we began seeing his typical motor tics, which usually occur before he has his staring spells. We had a button that we had to press everytime we saw an episode, so that the neurologist knew to check the EEG and video for seizure activity. I left the hospital around 3:45 pm so I could pick Roslynn up from her grandparent’s house, but in the time from G waking up, until I left the room, I had counted close to 30 clicks.

I picked Roslynn up and we went home and settled down for the evening. I ended up face-timing Derek before bed so that we could say goodnight to G and daddy. At the time of the video chat, G had eaten very well and was ready for bed. He had blood work set for that evening, but because he had his medicine, it was rescheduled for Tuesday morning before his next medication dose.

I was surprised to hear from Derek that Greyson was going to be discharged on Tuesday, after spending only 32 hours in the hospital. After speaking with the neurologist and getting the blood work completed, Greyson and Derek were discharged and sent home. This was much relief to me because I felt that the house was very quiet and empty on Monday, and I was not prepared to have another night of silence.

Post EEG face- angry his hair is wet

Results began to trickle in to Greyson’s patient portal on Tuesday afternoon and into this morning. He had some abnormal blood results, which will be addressed at his follow up appointment next week and the neurologists report showed that Greyson was having frequent seizures in his sleep. On his previous EEG, Greyson’s seizures were focused primarily in his parietal lobe, but this EEG showed sharp seizure activity in the left side of his temporal lobe. These results are both good and bad because his parietal lobe seizures seem to be controlled with the Trileptal dose he’s on, but the temporal lobe activity is not news we were expecting.

Moving forward, we continue to press on and find how we can help our little man. Upcoming appointments with Dr. Comi, Dr. Stein, the CARD program at Kennedy-Krieger and a genetic specialist, will most likely bring us into February 2019. Many uncertainties await us, but we are pushing along and look forward to seeing Greyson’s personality grow. Who knows, maybe Santa will bring us some much needed R&R and a nice break from doctor’s offices.

Zonked out, comfortably at home

Also, stay tuned because Halloween is a week from today, and Greyson is going as a little Chewbacca!