I Get High With a Little Help From My……Parents?

A fair warning before anyone reads this post:

Whether you agree or disagree with medical marijuana, don’t believe in it, swear by it or are not educated in it, I do not care. This post is therefore not a lecture, recommendation or meant to sway one’s opinion in either way. This is strictly our family’s experience with the controversial “drug” and the reasons why we have chosen to give it a try for Greyson.

So, I guess it’s best to begin with explaining the entire process of obtaining a medical marijuana ID, prescription and products.

First of all, obtaining the caregiver/medical marijuana ID is like going through Fort Knox. You have to fill out an application online and get your criminal background/FBI fingerprints done. Even if you’ve got all your clearances and have been fingerprinted for other reasons, you have to get a specific category for the fingerprints, so other prints don’t count. Once completed, you wait for the results. In the meantime, we looked up local doctors/offices that are in the state system to write prescriptions for marijuana. After sifting through all of the prescribers, we found an office in Lancaster that completed an evaluation to show medical necessity for the marijuana. After the evaluation, it took a few weeks to have the doctor send the evaluation report to the state for review.

Medical marijuana scripts are not like normal scripts- you don’t go to a pharmacy with a written prescription and pick up the medicine. Instead, you wait for the medical marijuana caregiver ID (caregiver ID’s are for individuals that are designated to obtain and administer marijuana to minors, consumers, clients, etc.) to come in the mail. To determine the dosage and combination of THC vs. Cannabis, you have to meet with a registered pharmacist to discuss specific medical history and information before the script is filled.

We began researching the option for medical marijuana in the fall last year, but let it go for a bit because of the holidays and work was getting busy. When the topic came up again earlier this year, I agreed to Greyson trying the drug, but I wanted Derek to take charge of obtaining the information, card, etc. since I have managed all other appointments/medications, etc. over the past few years. Derek obtained the prescription, did the consults, fingerprints and all. The entire process took about 6-8 weeks, but it moved fairly quickly.

We started Greyson on a specific regiment of marijuana, combining pure THC and Cannabis oil. He receives the medication via a dropper, three drops twice daily, with an optional third dose in the middle of the day, if needed. So far, he’s been on the medicine for 3 days and it has made a HUGE difference in his behaviors and aggression. This past week, there was no way I could take both kids outside by myself without Greyson trying to run off. By yesterday, Greyson not only allowed me to hold him for about 15 minutes, but he also stood in one place for about 20 minutes outside, with zero attempts to run off. In the 3 years, 8 months and 3 weeks that he has been alive, I have never seen him so calm and happy!

Today, we visited my in-laws, who have an awesome back yard/playset for the kiddos to run around and play on. I was nervous at first because Greyson was so excited and happy and immediately darted from the car as soon as the door opened. Luckily, he ran immediately to the swing set and sliding board. I haven’t seen him follow any sort of direction before, especially commands involving stopping and keeping close proximity to us. This kid followed almost every direction given to him. He stayed close by and had so much fun being outside for awhile. At one point, I even thought to myself, “wow, this is what it feels like to have a typical boy”.

I have read arguments and different opinions regarding medical marijuana. We have discussed the pros/cons with his medical providers and determined that it was worth trying, and I am so happy with the results thus far. There certainly are moments when Greyson appears to be really out of it, or “drugged”, mainly when he has his seizure meds/night time medicines that already make him drowsy.

Stay tuned, but for right now, we are hoping that we may have actually found something to help with his impulsiveness, irritability, aggression and self-injury.

Having fun outside at Grammy & Pappy’s house!

Roslynn has also started weekly outpatient therapy with a social worker, to address her anxiety and fears surrounding Greyson and his behaviors. She is still afraid of him when he is throwing a tantrum and is hypersensitive to loud noises. She’s been really afraid to do much of anything by herself recently, especially using the bathroom, going up or downstairs alone. Though she’s only had a few sessions, she has already learned that jokes help her focus on things other than her brother and that taking deep breaths help her when she feels sick or scared. Lots of uncertainties also surrounding the pandemic and whether mommy will be going back to work or not, have also made things a little bit more nerve wracking here, too.

I have been thinking a lot about the saying that most moms have heard: “the days are long, but the years are short.” And boy, do I really get what they’re saying. I feel like the stars are finally aligning and maybe, just maybe, we are getting somewhere.

Lost Time

So much has happened since my last post, I don’t even know where to begin!

For starters, I lost my job on March 2. I am not going to go into details about the breakup between me and my former employer, but at the time I was a wreck. After the initial shock and sadness, it turns out, I am quite relieved. I never realized how liberating it would be not being tied down to a “9-5 Job” and the best part of all, is that I’m spending time with my babies.

Finally was able to take her to a park

With the scary Coronavirus going around and schools all being cancelled, I’m certainly making up for lost time with the kids. After all, I went back to work after 8 weeks home with Roslynn at first, and only 6 weeks after Greyson was born. The first two weeks of my unemployment, Greyson and Roslynn were still in school, so I was running around, playing mom taxi and spent about 10 hours cleaning up the choir room at the church. I also had some time to organize different things in the house and work on tasks I had not been able to do for a long time.

Helped my sister paint her ugly red diningroom

Sadly, the virus has cancelled everything, so I have been stuck in home quarantine since mid-March. I’ve been a big “homebody” for awhile now, so staying home hasn’t bothered me much. I’ve used my time well, applying for jobs, cleaning/organizing, preparing items for consignment and best of all, learning more about Greyson and the extent of his needs.

Luckily I have been home for Greyson’s most recent break-through seizures. He has gone through a growth spurt over the past couple of weeks, but his med was never adjusted to keep up with the weight change, hence the seizures. Once increased, those seizures stopped….thank you Jesus! He also began Guanfacine a few weeks ago, which wasn’t showing much success with the small dosage prescribed, so that too was increased. He was displaying a lot of aggression and self-injury the first couple weeks, but Derek and I assumed it was from the change of schedule and his daily routine.

Bruises from his headbanging and punching himself

Late to the game, but I am now realizing things that absolutely need to happen to keep Greyson content, such as:

  1. All lights on downstairs and in the hallway.
  2. Absolutely NO baths unless daddy is home.
  3. Pull ups are the only thing in stock at grocery stores, but he will ONLY wear the pull ups with buzz/woody on them.
  4. Short sleeve tees and sweats are his preferred clothing, but his overalls are taken out for days he decides he wants to be a stripper.
  5. He will only nap if the tv is on, volume on low and he is tucked tightly under my arm.
  6. He is an avid snacker and refuses to eat breakfast or lunch.
  7. The only movies/shows that are allowed on the tv are Pixar and Disney. Nothing else.
  8. His juice, which can ONLY be honey crisp apple juice, should preferably be at room temperature with 3/4 juice and 1/4 nursery water with fluoride.
  9. He likes to wear Roslynn’s nightgowns when he is upset. (I still have not figured this one out)

Proof, in case you don’t believe me

I’m not quite sure how I kept him alive for almost 3 full years before realizing these quirks he has, but better late than never, I guess. I am brainstorming my next home DIY project on a budget, but am content with my biggest task at hand right now: finding a grocery store with available pickup/delivery times.

The past 5 weeks have really taught me a lot, through all of the changes happening in my personal life, but also the changes to the world around me. The biggest lessons I will take away from this time, other than the fact that the US was clearly not prepared for a pandemic, is that I am worth so much more than I have settled for. I have an impressive skill set that I can offer a company and I can survive being a stay at home parent, a task I never thought I could try to take on.

While the future remains unknown for myself and many others around the world, I know my story still has a lot to be written.

Guarding his human

Plumber Greyson helping Pappy fix a pipe

Duke, the Easter bunny

Playing House

When I was younger, I loved playing house. I would go outside and play in our log cabin playhouse (it was huge and made out of real wood by our neighbor) for hours. The playhouse was the place to be on our block, the entire backyard made into a kid’s playground dream. We were extremely fortunate that our parents were able to make us an awesome place to play, which we did during all seasons and types of weather. I always pretended that I had twin babies (I had the Baby Tumble Surprise Twins- super popular Christmas gift in 1997) and that I had the coolest house and cars, etc. I imagined I had the perfect life, perfect babies and perfect house.

Flash forward 23 years and I’m still playing house, except it’s real and it’s a lot harder than I ever anticipated. Also, instead of legit twin baby dolls, I have “Irish twins”, one of which is the equivalent of 2 1/2 kids. Now I don’t think think I could ever have that boring, plain life. I got my first taste of being a normal mom last night. Since Derek and Greyson were in Philadelphia at CHOP, Roslynn and I decided to go out to dinner with my good friend, Julia and her boyfriend. It was so odd leaving work and picking up one child to go to a restaurant to actually sit and eat. I felt like a normal person again. Afterwards, once we got home, the house was too quiet. Ironically, I got 5 hours of sleep (most I have in months) and I was more tired today than normal! Essentially what I have learned in the past 24 hours, is that I need to be a normal person sometimes and make time for normal things. I also really need the excitement of Greyson in my day. It was so lonely without his belly laugh and the sound of him staircase surfing at all random hours of the night.

Waiting for Julia to arrive for dinner

The next bit of information is per Derek, so I am simply relaying this.

Greyson and Derek checked into CHOP around 5:30pm. It took a good bit of time to get all the electrodes on his head, cap put on and wires stuffed into the backpack he carried around. The electrode placement is always extremely difficult for G, especially since the glue to hold the electrodes on, is super stinky and gross. After having the opportunity to eat dinner and relax, Greyson fell asleep. Unfortunately, he did not stay asleep through the night. After tossing and turning and a tough morning, he was finally discharged from CHOP around 1:00pm. Luckily, the staff was able to get the data they needed and even got the glue out of his hair before he was discharged.

After 5 different seizure medications and two years of finding a medicine regiment to control the epilepsy, we have finally received good news.

Greyson had zero instances of focal seizures while he slept and while awake. This essentially means that the Onfi is working! He has had minimal side effects with it and I’m really feeling good that we finally have found the right mix of meds. 835 days after his first diagnosis, we finally have a solution.

Finally

I’m waiting for a final report from the neurologist, but this is the best news we have heard in over two years. We needed this good news. We have been really struggling over the past couple of months, but all of those feelings are currently on mute. We are so excited. We still have a long ways to go, but this was the perfect push we needed to keep our chins up. Excuse me if I am giddy tomorrow, but TGIF and we have a successful medicine managing seizures that were once deemed uncontrollable.

Happy face for my happy baby boy

Reflections of a Year: 2019

Sums up 2019 perfectly

Skimming through my posts from 2019, I realized it was a lot more eventful than I thought. No wonder I’m exhausted every single day!

Exactly one year ago, I was reminiscing about 2018, which was an awful year. Awful may actually be too nice. We lost several family members in 2018, and we continued to get more and more confused about Greyson’s behaviors/meds/condition/treatment.

When we started 2019, Greyson was refusing clothing and eating his own feces. We also began 2019 with absolutely zero visible seizures. Hard to believe that G only began having Grand-mal seizures in May of this year, it definitely feels a lot longer.

Along with the first grand-mal seizure, we had lots of “firsts” in 2019: first dentist appointment, first family vacation since being diagnosed, first day of preschool, first ER trip, first extended EEG and first set of stitches. Despite the chaotic day-to-day events in 2019, I am so relieved that we didn’t have a repeat of 2018.

We also learned a lot about Greyson’s condition over this past year. Along with the diagnosis of Autism, G has several different co-morbid conditions that seem to all be impacting his every day life, including Periventricular Leukomalacia (white matter brain disease caused by brain damage at birth) and the genetic mutation of the STAMBP gene. We still have a far way to go, but we have finally settled on the idea that Derek and I may never know what truly is going on with Greyson and what the future holds.

Since my last post, Greyson has begun new medicine for his (possible) Electrical Status Epilepticus in Sleep (ESES) diagnosis. We are currently on a trial medication named Onfi for this particular condition, which is essentially when an individual has continuous spiked waves in the brain while they are sleeping. The plan for this medicine is to continue the Onfi and the Vimpat (his daily anti-convulsion med). We will have another 48-hour EEG in February, this time with admission into CHOP’s pediatric neurology program in Philadelphia. We are also waiting for more diagnostic testing of G’s DNA/Genetic Samples. With the development in science and research on genetic conditions, we are hopeful that someday we will have more answers about the STAMBP gene and Mic-Cap Syndrome.

Roslynn had a tough second half to the year, with a lot of G’s aggression being taken out on her. Luckily, she has been playing and interacting much better with Greyson over the past two months, and I am definitely seeing more reciprocal play between them. She is enjoying her weekly dance class, preschool, playing with her cousins and walking my parent’s puppy, Charlie. She is set to begin kindergarten next year and though I am not ready for that, she certainly is. She loves to learn and has a fun, sweet and gentle personality and is the best behaved 4-year-old I know.

Derek has been extremely busy with his (not so) new job at T.W. Ponessa & Associates. He has been busy seeing clients, completing Functional Behavior Assessments (FBAs), making data charts, token systems and most importantly, enjoying having a job that he loves to wake up and go to. I am so proud of him and his accomplishments and look forward to what 2020 has in store for him.

Last but not least, I have been keeping myself busy with the typical: working full-time, managing two children and one grown man’s schedules and appointments and keeping my sanity (or the best I can fake it!). I am going into my 8th year at CADD and loving my new desk/tasks that the end of 2019 has brought my way. I’m looking forward to 2020 and the possible professional and personal endeavors that may come my way.

I always joke that once you hit 25, New Year’s Eve doesn’t matter anymore. I’m honestly impressed that I have enough energy to type this and that I’m not zonked on the couch right now. Kids should be in bed soon and I will be ringing 2020 with Derek, most likely by both of us passing out (from exhaustion) by 10 PM. I am more than okay with a quiet end to 2019 and hope that 2020 will bring peace, comfort and happiness to our family and all our friends, family, supporters, coworkers and all who support us on a daily basis.

Saying goodbye to 2019 by posting some of my favorite photos and cheers to 2020 with sparkling apple juice!

Snuggle Buddies
His number one friend
2019 School Photo
Showing off her coloring skills. Waiting for her surgery (tubes/adenoid removal)
Tap Class
He loves the lights
4:30 am Christmas Morning faces
Feline watch dog
Could have been our Christmas Card photo but I didn’t send any LOL
Little Diva in the making
Besties
Christmas Eve Goobers
Cheesy Smiles for Momma
Derek and Rozzie at her class Thanksgiving party
Funny faces and dress up
Zonked with Duke
Chocolate face
The fur babies

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.

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.