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!