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 ❤️.

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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!

The Fine Line

My little monster

When a family or person calls into CADD to request an evaluation or services, I am the first person the requestor will speak to. Most calls generally last about 7-10 minutes each because it takes awhile to obtain the information needed from the family and to explain our evaluation process and services.

There’s always a line that I will not cross when taking phone calls from prospective clients: no clinical information or recommendations are given to family and I do not get personal with parents. This is especially difficult for me personally, because I want to reassure parents that they are taking the right steps towards treatment. I try to put myself in parent’s shoes- many of them have no idea what they’re doing, just calling us because their “child’s pediatrician told (them) to.”

Yesterday, I received a phone call that really pressed that fine line of professionalism for me. A single mother called in to see where her child is on the waitlist. She was obviously very overwhelmed and emotional. She and I spoke back in May and that’s when she received the new patient packet to complete for her child. You can imagine her relief when I told her that her child was ready to be scheduled and that I just needed her child’s completed intake paperwork.

What I assumed would be a quick phone call, turned into a twenty minute conversation about her difficulties as a single mom. I chalked this up as a lonely mother who needed to talk to someone other than her non-verbal autistic child. Then I realized that I often feel that way too.

Once I hung up the phone with her, I had a fear that maybe I was too lax with her. Much to my surprise, the same mother called me again today. Our phone conversation lasted about another 25 minutes. This time, the mother was crying and confessing her fears for her child’s future. I assured her that she was coming to the right place if she was looking for professionals to be “real” with her and to give her guidance into her child’s care. She thanked me several times for listening to her and helping her navigate our services and complete the new patient paperwork, and jokingly asked if she and I could get coffee together. I chuckled but thought in the back of my mind, that’s what I need- another mother that feels similar feelings I do, or thinks about her child the way I do about Greyson.

Alas, now I wonder: do I continue to not tread along that fine line I have set for myself? Is it better for me to get personal with these parents without giving clinical advice because I understand how they feel? I personally would rather speak with someone that can relate to my feelings and fears, than someone who says “I know how you feel” without actually knowing. I absolutely love speaking with parents that call in to CADD, but the farther we go on our personal journey with Greyson, I can’t help but feel like I want to cry when a parent cries, be angry when a parent is angry, or celebrate their child’s smallest successes with them. All because I live the same life they do. I truly get it because I am attempting to survive the exact same way they are.

When I have an emotional mom on the phone describing her difficulties with her child, I often refer her to the PA Autism Resource Center (ASERT) to find a support group for other parents of autistic children. As I heard the words come out of my mouth today to this particular mother, I felt as though I was living a double standard. I have so many people telling me that I should join a support group, but I always brush it off. Why am I giving resources and ideas to other parents if I can’t even take my own advice?

My professional goal over the past two years has been to lead and live as a more professional individual. But now I wonder: should my goal be to maintain professionalism while I use my own personal story to lead me? Do I tread the fine line more often and truly connect with these parents that call in? Will that benefit me in my position, or hurt me? Guess these are just questions I will continue to seek the answers to….

Some of the wonderful staff at CADD @ our Ugly Sweater Christmas party

The Waiting Game

Sleepy minion boy

I am notorious for being the most impatient person in the world. I have such a difficult time waiting for things that I know are important and need to get done. I have always been impatient, which negatively effected me throughout my school years. For example, I would be handed a test or an assignment in class, and I wouldn’t even read the directions and breeze through it. Not sure if it’s anxiety or if I don’t like the feeling of waiting or anticipation, but I have never been the type of person that could sit back and see what happens.

Looking at where my life is now, I wish I leaned the skill of patience in my childhood. When you have a child with ASD or Developmental issues, life becomes one giant waiting list. From the initial phone call to early intervention, to our current wait for the CARD program at Kennedy-Kreiger, it’s been over a year that we have been waiting for clear answers. I should feel proud that I’ve made it over a year of waiting, but my anxiety of not knowing has been constantly on my mind.

At work this week, I was presented with some questions about my personal leadership strengths, areas of growth and how I perceive my current leadership roles. I used my blog as an example of how I want to lead other parents on this journey, to understanding and what they can do to make their lives easier. I also want to lead others because I want those parents that have neuro-typical children to accept and understand what other families may be going through. At the time, I always feel as though these miscellaneous tasks activities at work are boring and pointless, but then I sit and really think about the questions and reasons why we do them. In a way, that boring and pointless activity inspired this post.

Back in December 2017, we had genetic testing done as part of a research study through the Clinic for Special Children (CSC) in Strasburg, PA. The clinic is strictly devoted to children with Amish or Mennonite backgrounds and because Mennonite roots are in both Derek and my family, Grey was able to be seen there. We have been waiting for results since December. This past week, I finally received a fax from the clinic that had an overview of the results, but none that went into much detail. The results read:

“Thorough genetic results not available due to no severe abnormalities found.”

So for 10 months we have been waiting for some sort of genetic explanation as to why Greyson has epilepsy and that was the result. There was also another added comment to the fax, from the doctor G saw in December at CSC that said:

“Family history is positive for Autism Spectrum Disorder and borderline genius intelligence from biological father.”

Explains Roslynn’s ridiculous intelligence and observation abilities.

So for now, we continue to wait. We wait for more genetic testing through Johns Hopkins, a 24-48 hour EEG, a re-evaluation for his Autism Diagnosis and for an intake at the CARD program in Maryland. I wish I could say that I am used to waiting now, but I would be lying. I have however, gotten used to staying busy to keep my mind off of a wait, including some nice naps on weekends and evenings. Greyson has been enjoying them too.

A Friday “after work nap”

Rush Hour

Never again will I EVER make an appointment in Baltimore after 3 PM. Also, never again will I EVER bring Roslynn along with us.

As if Greyson’s crying for an hour wasn’t hard enough, Roslynn decided to give us a full-blown concert of nursery rhyme songs on the way home. Everything from “Mary had a Little Lamb”, to “Row, Row, Row Your Boat”, was on the set list. A 2 hour car ride of Roslynn singing at the top of her lungs, except for the time she was screaming because she wanted to call her Nana……Did I mention that I woke up with a headache and have had maybe 9 hours of sleep in two days?

Greyson’s appointment began as they all do: vital signs while he screams, cries and fights with us. Once the nurse got the vitals she could, we were escorted into the room to wait for Dr. Comi. The kids had built up energy that they needed to get out from sitting in the car, so naturally they decided to start wrestling on the floor.

I swear they love each other

In the midst of the WWE match happening on the exam room floor, Dr. Coming made her entrance. We finally got a definite answer- Greyson has NO brain activity consistent with Sturge-Weber Syndrome. This is great news! However, this does mean that he can no longer be seen at the Sturge-Weber clinic in Baltimore. We do know that his diagnosis of ASD still stands, so we were referred to the Center for Autism and Related Disorders (CARD), through Kennedy-Krieger. Unfortunately, this program is in Columbia, MD which is a two-hour drive from our house. We will weigh our options and determine how we will proceed, but in the meantime, we will see Dr. Comi again in January 2019.

Greyson will also be admitted into York Hospital on October 22-24 for a 24-48 hour EEG study. Our new local neurologist, who will be following Greyson’s care in the future, ordered the EEG in hopes that he could catch a seizure episode on EEG. The only downside to this is that Greyson will be hooked up to the EEG electrodes for a day or two, in a small hospital room that is not specifically for pediatric care. I’m having a panic attack just thinking about it. I’m hoping that this EEG will give us more answers and direct us where we need to focus our attention with the epilepsy diagnosis. As if this all wasn’t enough, we will also have our one-year reevaluation for G’s Early Intervention services within the next month, and his reevaluation at CADD to check in on his development.

Please keep Greyson in thought over the next few weeks. Derek and I feel like this is all overwhelming and exhausting, so I can’t imagine how Greyson feels with 2-3 different appointments per week, on top of his daily therapies. Pray for our strength and sanity also, because we typically run on very little sleep, both work full-time and have to manage 8-10 appointments per week for G. Somehow through it all we keep smiling and pushing through, despite wanting to give up and live a normal life.

I try to remember that God sends special children to special parents, and there isn’t anything that we can’t handle.

Even G keeps smiling through this process

Goodbye summer, hello fall.

November will mark one full year since we began our diagnosis journey. Though we are getting closer and have some pieces to the puzzle complete, there’s still a long way to go.

Greyson has adjusted well to his doubled dose of meds, but we are still seeing seizure activity and even some mini-stroke episodes every so often. G is full of life and energy. He is always moving and/or eating, sometimes together. He has a love for reading books/tearing out the pages of books and more recently, music.

Derek and I always joked that we would breed musical prodigies, but we both agreed that it was something we would never push on our kids. My parents fully supported my musical abilities and other than years of torture with piano lessons, I was never forced into being a musician. Music has run deep through my family, starting with my great-grandmother and her siblings. My Nana encouraged my grandpa to play piano, as she did and her siblings all played a musical instrument. My great-grandparents did push music on my Nana and her siblings when they lived in Poland and it seemed to trickle down to my children.

Greyson is liking music so much recently, that it soothes him and Derek swears that he has him conditioned to come to him when he plays one particular song for him. Our most recent search is for grants that we can apply for, so G can take either music therapy classes or daddy & son aquatic or therapy/swim sessions. Naturally, I think he would enjoy the music sessions more because it’s literally in his genetic makeup to love music. We have also paired up with our MA insurance plan to find available grants and resources to provide a seizure alert dog for Greyson. I’ve been told stories of breeders donating a puppy to a child with disabilities, and local churches providing a grant for the dog to be trained. We would love to have a dog to alert us when something is wrong and to comfort Greyson when he is having a tantrum, but the cost of training or obtaining a dog that is trained, is nearly impossible for our family.

I never truly understood the struggles that the parents of our clients at CADD go through daily, until now. Through my position and desk space at work, I hear/see many of the clients with their families and have the opportunity to greet and make small talk with some of the parents. The families that particularly strike me, are those with the non-verbal, or aggressive kiddos. I see kids in their teens, or young adults that are non-verbal with many challenging behaviors, and I wonder how that child’s parents survive. Before I had children, I would think that those parents made it look so easy. They had help from BHR Services, or respite care, many of them did not work and received SSI benefits to stay home and “take care” of their child, AND they didn’t have to pay for healthcare! How easy it must be!

NO WAY

From the minute that we first began to see red flags with Greyson’s development, our entire world changed. I now understand why a parent often has to stay home with their child. Simply answering the phone calls to set up services, or to manage my child’s appointments, is a full-time job! Last week alone, I had over 35 voicemails from different nursing agencies, our insurance companies and Greyson’s therapists- all of which messages were directly related to Greyson’s care. Exhausting……Mentally, we are drained. Emotionally, we are numb. Physically, we are spent. I am not sure how we are continuing on one year later, but we are. We do it for him, so that when he’s 30 years old, he’s not stuck in a group home, non-verbal and aggressive. We are sleep deprived, so that he can obtain the best treatment from the best doctors around. We cry because sometimes that’s all we have left to spare. I’m not saying this to gain pity. I’m saying this so that others can see a glimpse of our everyday lives, especially coming from someone who was on the other side of things two-years ago.

Fall is a new season. It’s my favorite season. I love the colors, the smells, the crisp air in the mornings and evenings, the sound of leaves crunching under my warm boots or moccasins. It’s also a time where the trees show us that it’s okay to let something go and that we can survive and move along, by shedding their leaves and preparing for new ones. The fall holds many opportunities for family adventures outdoors and memories to be made, despite my fears of what others will think when my son has a tantrum in public.

The next few months may be unpredictable for us, but we shed our leaves as we prepare for a new year.

Little Yoda, last Halloween

Zonked on Nana from the Halloween parade