The past couple of weeks have been fairly calm (knock on wood). Greyson is slowly, but surely adjusting to his higher dose of Trileptal and is responding well to it. He is still having strange tics and shakes, but hasn’t had any huge issues except for fussiness and headaches.
Friday, September 7th, we had our second laser treatment down in Baltimore with Dr. Cohen at JHH. We drove down early in the morning and checked in with 10 minutes to spare before the appointment. Initially, I thought that this appointment was a simple follow up from the first, but after checking into the instructions for the appointment on the app, I realize we were having another treatment. Luckily G doesn’t have to fast for the treatments, so derek and I were well equipped with cereal, juice and Valium. We prepped G’s face, neck and ear before we went down; alcohol wipes to clean the skin, prescription lidocaine to numb it and half way on the way to Baltimore, we give him the Valium to keep him calm.
Greyson did fantastic during the procedure. The first time around, he was screaming and crying, but we brought a video for him to watch and he was able to stay a little more calm. His face bruised instantly after the procedure because Dr. Cohen used a stronger voltage in the laser. He said we should expect for it to be bruised and tender for 4-6 weeks. So far, his face just looks a little more red on the left side, but nothing major.
We have our next appointment on September 28 in Ephrata with our new neurologist, Dr. Stein. Far less travel time and he is in network with our insurance, so no more fighting with Wellspan to cover visits. We will still continue to see Dr. Comi in Baltimore until Greyson’s diagnostic testing is complete. We have a referral in for a genetic counselor, which hopefully will be the last step to rule-out Sturge-Weber Syndrome. I am hoping we are nearing the end of the tests and imaging for G. It’s extremely exhausting and stressful for him and both Derek and I.
We have had MASSIVE success with Greyson’s ABA services and his intensive teaching (IT) sessions recently. He is a quick learner and has even began to sign independently for music when he wants it. Greyson’s biggest reinforcer is regular M&M’s. He loves them! As soon as his RBT brings out the candy, G begins completing his probes- “touch belly”, clapping, high five and music. The first time I was able to see him have a successful IT was on Friday after his procedure. I had to stay home with him because he was still on Valium and needed to be monitored (luckily, he was just approved for in-home nursing care for 45 hours a week, so once the nurse is able to start, we will feel less stress about having to leave work frequently). G now has some independent signs- eat, drink, more and music. The signs in combination with his IT skills and compliance, G is doing amazing trying to show Derek and I what he wants and when. His services are finally showing their success. As long as we have M&M’s, nobody will stop this kid.
My 28th year around the sun was eventful, to say the least. I never expected it to be my most difficult year yet. It has also been a year of teaching and learning. It recently dawned on me why my life has been moving in the direction it has been.
Since I was in middle school, I wanted to be a musician or a music teacher. When I went to college after a successful high school music career, I thought I would make a good private voice teacher or a professor at a university, teaching voice and vocal pedagogy. I auditioned at a few graduate schools during my senior year at Millersville, deferring an acceptance from Ball State University in Indiana, and being accepted into Peabody Conservatory at the Johns Hopkins School of Music. Peabody was my dream school, I fell in love with it instantly upon my first visit there and practiced every single day until my audition later that year. When I received my acceptance letter in the mail, I felt so happy. I had worked for months to receive that letter, so when I saw how much the graduate degree was going to cost me, I panicked.
$55,000 a semester, for 4 semesters. Without any scholarships or a TA position, there’s no way that was happening.
When I sent in my “decline” response to the admission office, I cried for days. I had given up my entire senior year of fun, friends and parties, so I could study and prepare for grad school. I began to wonder what my future was going to be like. Was I a failure? I wasn’t really good at anything but music. I decided to work for a year, post undergrad and save up enough money to afford my masters degree. I was determined to further my studies and become a voice professor.
Finding a job with a bachelors degree in music was difficult. Luckily I had experience working with children through my work at the Lancaster Rec, so I was able to apply for jobs that involved working directly with children- including a TSS position. I applied to several agencies locally, in hopes that I could find a TSS job with benefits that could pay enough for me to afford grad school. I stumbled upon Philhaven’s Behavioral Health Rehabilitation Services (BHRS) on a whim and was directed to the new ABA services through CADD. Because I had experience working with children with disabilities through the summer camp I worked at, I was able to interview for the new program that CADD had started for autistic children. I interviewed and was soon offered a job as a TSS in the program.
My goal was to work as a TSS for a year, then go to grad school to follow my career plan. I instantly fell in love with the job. I liked feeling like I made a difference in someone’s life and seeing the progress that my clients made. The job taught me a LOT about Autism and Developmental Disabilities and taught me a lot of patience and understanding. Little did I know, I would be needing that patience for my own child later down the road.
When I got pregnant with Roslynn, I decided to leave my TSS position and take a job in the front office of CADD. I miss the one-on-one client interaction and support, but my job in the office has given me many opportunities I don’t think I would have had as a TSS. I learned about resources available to clients, different providers and I had immediate access to the staff at CADD, who truly are experts in this field. Everything I would need three years later, was right there in front of me.
I learned how to talk to insurance companies, how to fight and advocate for what our clients needed at CADD, which later transpired into me advocating for my own son. There are several moments throughout my 8 hour work day that I talk to parents that have gone through, or are going through the same things my family is. It is so incredibly difficult for me to not shout from my desk “I know exactly how you’re feeling!” I have not left CADD to attend grad school for a reason- I was given this opportunity to work at this organization because God wanted me to learn and use my knowledge to educate and advocate.
Flash forward to present time and why this all matters….
We received the images and report from Greyson’s MRI about two weeks ago. I haven’t posted anything about it because I needed time to digest everything and work through the increased problematic behaviors that Greyson has been having. We called Dr. Comi early last week because of a dramatic increase in Greyson’s crying and irritability. We were advised to reduce his trileptal because it could be causing the irritability. Almost immediately, we saw even more behaviors: aggression, restlessness, nonstop crying and screaming. We couldn’t handle it any longer. We called Dr. Comi and had the medicine increased again, which has been helping with G’s irritability but is making him extremely tired.
The MRI showed no evidence of brain involvement common in Sturge Weber syndrome, which is great. However, it did show mild to moderate PVL- periventricular leukomalacia. PVL is defined as:
PVL is commonly found in infants that experienced brain injury at birth, such as lack of oxygen or other fetal distress. The white matter spots were seen more on this MRI than the scan we had in March, which could mean that the white matter is spreading, or the imaging done at Hopkins was more advanced than Hershey. Dr. Comi proceeded to inform me that she would suggest we see a genetic counselor to complete a full genetic testing array, to hopefully see what the underlying cause of G’s encephalopathy and epilepsy is. Until we find a genetic specialist in network with our insurance, we wait to see how G handles his increased dose of meds and continue his routines.
With all of this said and done, I am a huge fan of birthday wishes. I haven’t had a cake or blown out any candles, but my wish for this golden birthday is that my 29th year brings answers and progress. I wish for strength- for myself, for Derek and Roslynn, our extended families and for Greyson. I hope we receive some good news and see progress with Greyson’s treatment and I wish for happiness and health.
Yesterday was the day of Greyson’s functional MRI at John’s Hopkins in Baltimore. As previously discussed in my other posts, anytime we travel to Baltimore, I make sure G’s bag is packed the night before a d stocked with his favorite toys/books. This Friday was atypical- I went into work before heading down to JH, which I usually don’t do, but we were a little short-staffed.
I got up at my regular time, 4:00 am and got ready to start the day. After being traumatized during our first attempt at an MRI with Greyson (lonnnnnng story for another post), I was a little nervous for the procedure. I got to the office and completed my typical first thing tasks of the day, checked in a few patients and left to go pick up G and Derek.
Roslynn stayed with my parents, so Derek agreed to meet me at their house to drop her off and to switch G to my car. I made it to my parent’s house and kissed Roz goodbye and made sure the car was ready to go. We hit the road around 8:45, which gave us a little extra time for traffic, parking and navigating our way through the children’s hospital wing at JH.
The purpose of the MRI, or big ass magnet as I call it, was to look further into the different sections of Greyson’s brain that could be impacted by these seizures. It was also to check specifically if the first MRI missed identifying factors of Sturge-Weber Syndrome. Apparently, unless specific imaging was used with different axis and positions, many MRI procedures miss the images doctors need to diagnose SWS. Because G was diagnosed with epilepsy, it does change the previous rule-out of SWS. Dr. Comi wanted us to do a specific sequence of imaging just to confirm or rule-out the possibility.
Greyson’s arrival time was 10:45 am for a 12:00 pm appointment. Upon parking in the garage, we realized that we took the stroller out to make room in the trunk for miscellaneous items, so Derek ended up carrying G the entire way. I check-in and get everything ready for the MRI, and I have a seat in the waiting room. Greyson is a very impatient kiddo, so he stayed in the hallway, running around and being active. Luckily the child radiology department is towards the top of the building, and away from people, except security, staff and a few other families, so Greyson had free reign of the hallways.
10:45 comes and goes and Greyson’s name has not been called yet. By 11:30, G had run around the halls with Derek so much, he literally ran himself to sleep. Luckily he slept until his name was finally called at 12:20 (G had also been fasting since 7 pm on Thursday), and we made our way back to pre-op.
Greyson woke up during the pre-op because people were poking at him and it was quite noisy. He was getting fussy just as it was time for anesthesia to be administered. You would think that after seeing your child endure so many tests and appointments, that you would get used to seeing them cry and struggle, but I think it definitely gets harder.
After we gave him kisses and he was sleeping, we were directed to the parent waiting room until he was in the recovery room. Many parents were there charging phones, eating lunch (vending machine food) and watching over the TV screen for their child’s number to change from operating room to recovery. The only nice thing about the waiting room, was that it was relatively quiet, had comfy seats and we had a nice view of Baltimore.
After about 2 hours of waiting and a pack of M&M’s later, we were called back to the recovery room to see G.
Greyson was dressed in his regular clothing still, surrounded by wires and nurses. We opened the door and he had just sat up, but was extremely drowsy. I knew immediately that he was going to throw a tantrum if he didn’t have food or some juice, so I gave him some while we waited for discharge instructions. Finally, about another 45 minutes later, we were discharged and made the long walk about to the car. I was so relieved that we were done and going home. I always feel a little on edge being in a bigger city, so once we hit I-83 N, I typically feel a huge sense of relief come over. This week, I didn’t. I think it’s because of exhaustion. We are so tired and mentally drained from trying to both work full-time and manage 10+ appointments per week. It didn’t help that rush-hour Baltimore traffic on a Friday afternoon, is hell.
Greyson did great. He truly is such a trooper. I feel so sad for him, but I know that this is the best route for his treatment. Unfortunately, we will not have any results until September, when we return to JH for a follow-up. Until then, we continue on with the anti-convulsants and monitor G for regression in skills and seizures. More to come soon, I’m sure.
We started Greyson on his anticonvulsant, Trileptal on Friday evening. Saturday morning, we gave him the second dose 12 hours after, as directed.
Derek and I did not notice any changes Friday, but Saturday morning we experienced a strange side effect from the medicine. Greyson seemed to have lost the feeling/control in his legs, stumbling around and unable to get up off of the floor. Though this was brief, the sight of G on the floor, unable to stand was terrifying. Luckily, this is only a common side effect caused by dizziness and a vertigo-like feeling. Another side effect we have noticed is that he is extremely sleepy. We have held off on giving him melatonin at night because he’s been so tired. He’s sleeping about 8-10 hours AND napping during the day for 1-3 hours.
A non-melatonin slumber
Some positives have come from the medication (though it’s still a low dosage). G has been so much more happier and has been crying a lot less. Not sure if this is because he’s getting adequate sleep now, or if the headachss have decreased with the medication. Greyson has also been a lot more tolerable of us picking him up and holding him. We were unable to hold him for longer than 15 seconds at a time before the medicine, but now we are averaging 2-3 minute holding sessions with him. He even let me hold him until he fell asleep for a nap on Saturday afternoon, which i have never been able to do in his 1 year, 363 days of existence.
Derek and I finally see some hope in our situation. We know it’s not ideal and that we have an extremely long road ahead of us, but having some sort of answer has given us some relief of the stress and tears we have endured for 10 very long months. With Greyson’s 2nd birthday quickly approaching (on Wednesday), I wish that we will find more answers and information about how we proceed. I wish that this next year brings a much happier little boy, who will have the ability to communicate more efficiently and participate in “normal” 2 year-old boy activities. I am so incredibly blessed to be the mother of such an adorable, funny and loving little boy, and I am praying we have more answers and progress by his 3rd birthday.
Our day started at 4:00 this morning. Naturally, I was prepared last evening for an early departure today- diaper bag, car, medical records (in my giant binder, organized by tabs) and distraction toys for G were all packed. We left at 6:30 am, which was going to put us in the midst of rush-hour traffic…..on a Friday. Woof.
Luckily I am a very responsible and efficient driver, so we made it to Baltimore in 90 minutes…including a Starbucks stop!
Once we got into the Outpatient Center at Kennedy-Krieger, I got us checked in. The two men standing at the check-in desk were faces I hadn’t seen before. They were friendly, as all staff there have always been, and got us checked in for the remaining portion of our multidisciplinary evaluation. We had finished the Eye portion, dermatology and neurology over the past three months, so we were finishing the rehabilitation and neuropsychology portions today. Once we were ready to go back to see the doctors, I was called Adele by the two men at the front desk, convinced that I am the singer’s doppelganger.
The first portion of the three-hour appointment was to meet with Dr. Comi regarding the results from Greyson’s EEG last Friday. Dr. Comi greeted us and asked if we had received any results from the MRI yet, to which I replied that we were not scheduled until September 17th, which was unacceptable to Dr. Comi. She called to her scheduler and had her bump up the MRI to next Friday. The urgency, we learned, was because Greyson’s EEG was extremely abnormal. His EEG showed “left parietal sharp waves and clinical seizures”, to which he was having the entire appointment today.
An answer, FINALLY!
We have been looking for any glimpse of an answer for 10 months now, so immediately my heart sank to my stomach. I was relieved, but sad at the same time. Sad that we have only just begun the long road ahead for treatment, but relieved that we finally had a small glimmer of hope to help push us through whatever the future holds. Greyson was prescribed Trileptal twice a day for a week, then we will bump up the dose next week to see how he tolerates it. Dr. Comi believes that with the medication, we would see a significant increase in G’s speech and language skills, along with his coordination and balance. We are extremely excited to hopefully see some progress with him!
There is still some uncertainty among a formal diagnosis, but we now know that he had encephalopathy with seizures. The functional MRI will hopefully show us what parts of the brain are.specifically impacted by the seizures and if there is anything we can do to help the progression of brain damage.
The neuropsychologist assessed Greyson and thought he was too young for an ADOS, which we agreed that he is not ready for, so we did a Vineland to evaluate his adaptive functioning skills. We should expect those results within a week or two, as well as the multidisciplinary report from the 5 clinicians we saw at Johns Hopkins and Kennedy Krieger Institute. For now, we keep Greyson healthy and continue to monitor him for the seizures, and we will hopefully know more after the MRI next week.
We also had an intake at CHI St. Joseph’s this past Tuesday, which has connected us to a child psychiatrist in Lancaster, Dr. Foley. This service will allow us to consult with another doctor in case an urgent matter appears, or if we will need social skills therapy and medication in the future. G cried the entire evaluation, even crying himself into a nap in the middle of the evaluation room. We are going to hold off on medicine for behavior until we have to, hoping that the seizure medication will help with some more of his pain and irritability.
My parents always fancied the Rocky movies while I was growing up, anytime they were on TV, they had to watch them. One can only hear “Adrian!” so many times….
Though the Martin family seems to favor Baltimore more than Philadelphia, Greyson reminds me a lot of Rocky Balboa. He often squinches up his face, just like Rocky does whenever his face is all swollen after a match. He’s also small and stocky like Silvester Stallone, and has a head of steel.
Greyson running around at 2:30 am- a typical weeknight activity
In the end of June (right around the time I began this blog), I was home alone with G. He loves to roughhouse on the living room floor, so we were playing around while watching NBC Nightly News. I noticed Greyson’s diaper was getting a little full, so I told him, “come on little man- time for a clean diaper.” Well, he must have heard me clearly because he came charging at me and head-butted me with his giant, steel head.
I felt the impact of the hit almost immediately. He hit me on the right side of my jaw, hitting my ear and cheek. I didn’t think too much of anything else at the time, except for the pain and the fact that G didn’t flinch at all. I stood up and noticed blood coming from my right ear, so I figured he just got me on the ear somewhere. Derek ended up coming home early from his planned activities and took over on kid duty so I could lay down and relax.
The next morning, I woke up with severe jaw pain and a migraine. I figured it was from the headbutt and took some Ibuprofen and went to work. Throughout the morning, I started seeing spots in my vision and my neck began to bother me too. I made an appointment with the doctor and went into the office around 2:00pm for a check into my headache.
Now, I had never had a concussion before, but I was almost certain that I had one. The doctor confirmed my suspicion and told me to go home and take it easy, along with directions in case I took a turn for the worse. I made a full recovery after a week or so and Greyson had no evidence of a bruise or any issues.
Flashforward to last Monday, July 23rd.
I went to the dentist for a routine cleaning and I was supposed to have a tooth repaired on the left-side of my mouth (filling was falling out). After the cleaning and some photos were taken of my teeth, the dental hygienist pulled the main Dentist in to check out my mouth. Dr. Po has been my family’s dentist for about 12 years now and I wouldn’t go to anyone else- she is AMAZING! Dr. Po asked if I had any issues recently with my teeth, or if I had been grinding my teeth recently. I informed her that I was stressed, so I could have been grinding them in my sleep again. Long story short: it turns out that I have two broken teeth on the right side and a cracked tooth on the left. I have to go back in August for a total repair of the two teeth on the right side and a bonding procedure for the left tooth. Yay.
Greyson has earned the nickname Rocky for now, because of his giant head of steel. It still shocks me that he felt nothing and I came out of the match with 3 broken teeth and a concussion.
Today was the day of our (repeat) electroencephalogram appointment at Kennedy Krieger in Baltimore. I woke up at 4:00 am to get ready for a 6:45 am departure. Luckily, I packed the diaper bags and had the kids clothes laid out last night to make the morning run smoothly.
We made it to Baltimore in record time this week: 92 minutes! I started working on a migraine before we hit the route 30 bridge into York county, so the drive down was pretty quiet and uneventful.
Derek and I came prepared with DVDs, snacks, juice and toys for the appointment. We checked in with 3 minutes to spare- G dressed comfortably in shorts and a T-shirt, and barefoot. He hates wearing shoes and socks typically, but ESPECIALLY in the car, so we let him go without the shoes (we carried him the entire time) to avoid a tantrum before the electrode torture began.
Greyson’s EEG required 25 electrodes on his head and chest. He began to resist and cry before the first one was even placed.
At least daddy looks happy
Placing the electrodes took about 20-25 minutes due to G’s wiggling and crying. The tech for the imaging was fantastic! She was so understanding, calm and soft-spoken. She turned the lights down and put on “paw patrol” so G would focus on something other than being held tightly and being poked at. We had a private area just for us, with our own lab tech, tv and bathroom, which I was grateful for because of his screaming and crying.
Greyson fought with us for about 30 minutes of the test- kicking, screaming, crying, hitting, biting and spitting at us, while Derek had him in a tight hold. Eventually, he gave up and passed out on Derek’s shoulder. About 40 minutes later, the tech came in and removed the electrodes and we went on our way.
G zonked out while Derek plays on his phone
By the time the valet brought the car around to the entrance, my head was pounding. I had a full-blown migraine. I was able to drive home, but was basically out of commission once I pulled into the driveway and put the car in park.
So, now we wait.
Next Friday, we will be heading back down to Baltimore for three appointments- an appointment with Dr. Comi to get the EEG results and two evaluations with a neuropsychologist and rehabilitation specialist. This week will be another week of more questions to write for the different clinicians we will be seeing, and another week of anxiety. Hopefully we can get more answers, but for now, we wait.