A Bounce to Remember

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Greyson's birthdayOne hour old

The first 24 hours

1st Birthday

Greyson’s second birthday

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

Travel Plans

Now that we have been back from South Carolina for a few days, I finally have a moment to post about our trip, and the days leading up to it.

My family typically schedules our vacations far in advance, which worked out well in this instance, since I needed time to do some research about traveling with an ASD child. Last time we were at the beach, Roslynn was 2 and Greyson was only 11 months old and not walking yet. Now that he is bigger, faster and stronger, I needed to make sure I had everything we would need for our venture south.

After months of googling, following different posts on Pinterest and getting advice from other parents of toddlers and ASD kids, I felt confident I would have everything set for the trip. We were leaving very early on Friday, June 21st, so I had a large list of things to get done beforehand, such as:

  • Taking Greyson to Baltimore for a med increase
  • Refilling all of Greyson’s meds, so we were covered for vacation
  • Work as many hours as possible into 3.5 days
  • Pack
  • Maybe sleep?
  • Prep the automatic feeders/watering devices for Carlie
  • Prep the house for us being away for 9 days

On Wednesday, June 19, we had squeezed ourselves into an emergency appointment with Dr. Comi down in Baltimore for Greyson’s recent seizure activity. After the office calling three times to change the appointment on us, we managed to get down there and discuss the seizures with her before we left for vacation. After describing (and Derek role playing) the seizures, Dr. Comi agreed that it would be in our best interest to:

  1. Catch a seizure on video
  2. Increase G’s meds over the next two weeks
  3. Contact JHU to get a skin biopsy with Dr. Cohen, to look for the second variant of the STAMBP gene

With all of the recommendations and increased meds, I felt that we would be okay to go to SC without any issues.

Wrong.

We left on Friday morning around 5 am. Luckily both kiddos were still drowsy, so we were able to drive for awhile without any crying/screaming. Once we hit Virginia, that all changed. We had G crying and trying to escape from the car seat and Roz upset that she wasn’t watching every movie that she wanted to watch. My family decided to stop at a restaurant for lunch, mid-state Virginia. G was already pretty fed up with the car and being confined to one area, that he was having a tantrum before we got inside.

The hostess informed us that it would be about a 20-30 min wait, so Derek and my sister took G outside to walk/run around until it was time to be seated. Roz and I stayed inside and wandered around the crowded “gift shop” type store that all Cracker Barrels feature. I managed to avoid having to buy Roz any toys or candy from the shop, so I was hopeful for a quiet(ish) meal.

Because there were 14 of us, we were placed at a long table in the rear of the restaurant, where 6 other tables were also occupied. Immediately upon placing G in the highchair, G lost it. He began screaming, crying, hitting, biting and headbanging at the table. I am still easily upset and embarrassed when it comes to tantrums and behaviors in public, that I was completely mortified that he was “ruining” other patron’s meals by his fit. Derek and my sister Sarah took G out of the dining area and began to walk him around to settle a bit. Once our meals were disbursed, they rejoined us to eat. Unfortunately, it was past the point of no return for Greyson. He refused to eat, was throwing things and hitting Derek and my mother; who were sitting next to him.

In the midst of my embarrassment, I did not realize that 4 of the 6 other tables had already been moved to another table, or took their food to go. Only after the waitress attempted to calm Greyson with french fries and ketchup, did I notice the empty section of the restaurant around us. I felt tears coming to my eyes as my parents reassured me that people are ignorant when it comes to special needs children and that G was fine. The worst of all was a table filled with 6 or 7 elderly patrons, who made a scene as they requested their table be moved immediately away from the section we were in. Despite the waitress’ attempt to make us feel comfortable and welcomed, I came to the conclusion that there must be absolutely no autistic people in Virginia.

Once lunch as over, we quickly left the restaurant and packed back into the car and made our was to Smithville, NC, where the hotel we were staying at overnight was located. I was hoping that G would settle down before we checked into the hotel, but he unfortunately didn’t. He screamed, cried, headbanged and was aggressive much of the afternoon/early evening. He also was up repeatedly in the middle of the night, crying, which typically is a sign he’s having seizures while he’s sleeping. We survived the night and left early the next morning, heading for Hilton Head Island (HHI).

So happy he’s on vacation

I prayed that evening for a quiet, fun and relaxing trip and I was relieved to wake up with a happy Greyson, finally. We made it to HHI around 2:00 pm and unloaded the cars. The guys went over to a grocery store on the island, to stock the fridge and coolers with food for the week. Greyson was much more happy running around a big space and I think he liked having a little more freedom than the hotel/car permitted.

We typically have the same routine everyday on vacation: wake up, breakfast, beach, lunch, pool, showers, dinner. All of these events taking place over a 10-12 hour period. Shockingly, I managed to read an entire book on the beach in 3 days. I felt so accomplished and happy that I finally was able to read the murder mystery paperback that sat untouched on my bookshelf for two long years. It was so wonderful. The days were predictable, following the same routine on Sunday and Monday.

Monday afternoon, Derek and I took G up early to the house because we all were getting burned from the hot SC sun (even with SPF 70+!). I popped into the shower first and almost immediately upon doing so, I hear Derek tell “Greyson is having a seizure!”, from the living room. I jumped out of the shower and grabbed my phone and began to film the seizure to send to Dr. Comi.

Please note that this video may be upsetting to some and I apologize for his bare bum- we need him without a diaper on to administer meds during a seizure.

Even though we increased his anti-seizure meds 5 days earlier, I was still clueless as to what triggered the seizure, and why the medicine wasn’t doing its job. After sending the video to Dr. Comi and backtracking the previous hour or so, we were still puzzled as to what caused this to happen. The next day or so, we decided to keep G inside the house and monitor him because we didn’t want him to have another seizure while we were at the beach and run out of meds.

Zonked from the seizure

So, after losing a full day at the beach/pool, our routine proceeded as planned for the remainder of the trip. Derek and I even tossed in a morning over at the Island Playhouse, which is an indoor bounce house playground and rock/rope climbing walls. The kids loved it! I swear G didn’t come out of away from the bounce houses until Derek went in and physically carried him out to leave. It was a highlight from the trip, and an awesome memory we made as a family.

Roz having a blast in the pirate bounce house

G in the large bounce house

As much as vacation was enjoyable and fun, I was glad to get back home to normalcy, structure and our first babies. Of course, now I’m ready to go back again !

The view from our living room

Some other photos from the trip:

oi

40% vs 1%

Today we headed down to Baltimore again for our genetic testing results and a neurology follow-up. Again, another early morning commute down I-83 aka the construction highway, to an appointment that we may or may not receive answers or recommendations from.

Ready for the road trip

I was exceptionally nervous today for the appointments. We have been waiting for genetic results since December 2017, when we began the genetic testing process. Fully anticipating not getting any real answers, I didn’t want to get my hopes up that we were going to find out what has caused Greyson’s disabilities.

I drove down I-83 with countless thoughts in my head. What if they did find something? What if they didn’t? Should we pursue more options or tests? What else could we be doing for him to make him the most successful? I attempted to keep my mind off of the “what ifs”, and tried to distract myself with vacation discussions with Derek.

Once in Baltimore, it was the same routine: drop the car off with vallet, check-in at security, then with the outpatient clinic, then finally the nurse brings us back to start the appointments. The moment we stepped into the consultation room, G started crying and throwing a tantrum. I thought we were well prepared for the trip, fully equipped with snacks, juice, books and toys, but nothing seemed to calm G.

Finally, Dr. Julie Cohen, the genetic counselor came in the room and after a very brief greeting, cut right to the chase. My leg was shaking as we waited for the answers to all of my questions I frantically thought about on the drive down. When we had the samples taken from Derek, G and I in December, we knew the odds were not very good for getting an answer- a 40% chance of getting an answer, to be exact. Julie said that we “sort of” fit into that 40%, but not really. What does that mean?! We have an answer and a reason “why”, but it’s not a 100% today.

The entire exome sequence analysis showed only one variant in Greyson’s DNA makeup. Gene STAMBP, specifically variant p.R78X, which is responsible for MIC-CAP disease: Microcephaly-Capillary Malformation Syndrome. This variant is a heterozygous, autosomal recessive gene that was inherited from a carrier parent, and a “likely pathogenetic variant” contributing to G’s symptoms.

In people with microcephaly-capillary malformation syndrome, microcephaly begins before birth and is associated with an unusually small brain and multiple brain abnormalities. Affected individuals develop seizures that can occur many times per day and are difficult to treat. The problems with brain development and epilepsy lead to profound developmental delay and intellectual impairment. 

In G’s case, he only had one variant, which means only one parent was a carrier, often leading to a non-effected child. Because this disease is so incredibly rare, less than 1% to be exact, it is extremely difficult to detect. Because the exome sequence only looked at the overview of the chromosomes, there may be more variants that he has, that are currently unfound or undetectable with current technology. This all said, Julie did not feel that it was something that is too concerning, however, she did find that it was interesting that G presents many of the symptoms, but only had one variant. Because technology and genetic discoveries are everso changing, the lab will store our samples and retest them in two years when more information may become available.

That, in a nutshell, was the first appointment of the day.

Tempted to Google and self-research, I refrained and read the generic report that we were provided with. The nurses then came in to get Greysons vitals, which was difficult because he had fallen asleep after his 45-minute tantrum. About an hour later, Dr. Comi came out to bring us back to our appointment with her. We updated her on his development, behaviors, seizures and migraines and similar to what Dr. Stein stated earlier this month, confirmed that G was stable on his current meds and dosages.

She then pulled up the genetic testing report and connected the dots between the STAMBP variant and Greyson’s current symptoms. Commonly, children with MIC-CAP have one or more of the following symptoms:

    Severe Microcephaly (G does not have)
    Congenital Cutaneous Capillary Malformation (His Port-Wine stain)
    Infantile-onset epilepsy (He has)
    Profound developmental delays (He has)
    Whorled hair pattern (He has)
    Dysmorphic Features, such as cleft palate, thin lips, low ears, flat hairline and extra webbed fingers and/or toes (G doesn’t have any of these)
    Loss of normal protein function (He doesn’t have)
    White matter brain loss (G has)
    Thin corpus collosum and other non-specific brain abnormalities (He doesn’t have)

Coincidentally Greyson shows several of these symptoms, but because only one variant was found and research is extremely limited on MIC-CAP, Greyson is considered a carrier but not effected. Though not effected as of today, there have been cases that show a child to have MIC-CAP that has been inherited from only one parent and not both. This is extremely rare and not common, but we seem to hit the genetic jackpot everywhere else, so why not this too? The report goes on to state that:

“We interpret R78X as a likely pathogenic variant, related to the port-wine stain, seizures and global developmental delays found in this client.”

So basically, G fits into both the category of 40% no definite answer found and the 1% of the extremely rare variant that causes MIC-CAP. As of 2019, we know that it is so rare that he has an extremely mild form of MIC-CAP, but in two years, he could have the diagnosis. In conclusion, the report also offers another open-ended question after stating:

“While no other potentially disease-associated variants were identified by exome sequencing of the STAMPB gene, it is possible that this individual harbors a second variant that is undetectable by this test.”

So, he could have this rare disease, but a less crippling form? As of 2019, it’s a maybe, but come 2021, it could likely be a definite.

One last test that could show the second variant needed for the positive diagnosis, is a skin biopsy of G’s port-wine stain. Yes this is invasive and he would have a small scar, but what would be the benefit of that definite answer? Is it worth it, or should we just be content with knowing this is likely what has caused all of these issues? What good will a biopsy do if there’s not cure or treatment available for MIC-CAP? Again, we are leaving with more questions rather than answers.

After digesting all of the information accrued over the two appointments, I found it relieving to hear the fire alarm go off. A fire drill of all days, with our child that is extremely sensitive to light, sound and crowds, being carried outside on the streets of Baltimore for a fire drill. We found a nice bench and popped a squat until the alarms stopped and we were cleared to go inside and be discharged for the day.

A beautiful spring day with Daddy

After discussing all of this information with my mother (who always has the magic touch when needing to calm someone down to think about things), she gave me some great advice: “take a few days and process this information. These answers specifically will not make a difference to the past and the future at this time.” So, why worry about the future and the past? We can’t change our genes and our family inherits, so we will live for today. We will continue to support our son and help him the best that we can and pray that we find the peace of mind with this information.

“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

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