The past four months have been a complete blur. Truthfully, 2022 in general has been a giant blur. I’ll probably paraphrase much of my life in this post, due to the fact that I can barely remember much that has happened. I will acknowlege that I basically lose my memory when I am stressed, or am in a difficult situation. I definitely think 2022 knocks that one out of the park.
As I wrote about in my previous post, Greyson was recovering well from his VNS implant surgery, and all was going fairly well at first. We noticed he had a lot of vocal stims that almost always happened when the device was actively running. We also noticed that the device also makes him extremely aggressive about a minute or so before the device is on. The first few times we had to swipe the magnet over his VNS, he seemed to respond very well to the intervention. The VNS has appropriately reacted to the seizures, haulting many within one or two swipes. We did two or three in person updates/adjustments with the Neurologist, and the rest of the VNS increases were done remotely, while Greyson was at school.
After about his third or fourth VNS update, Greyson stopped responding to the magnet during seizures. We went from one or two swipes, to four or five and still needing to use rescue medication. One particular seizure at school required all of the above, plus another dose of diastat. When this happened, I made the decision to change either the VNS settings or his medications. Because we were so far along with the VNS settings, we opted to stop his Epidiolex (the CBD based medication) and restart another trial of Onfi. Since weening Greyson off the Epidiolex, he has made a huge improvement on his seizures, not having a grandmal in a few weeks! The only downside to stopping the Epidiolex, is now he doesn’t have much of an appetite. As always though, once he stops having seizures, he doesn’t eat anything. When he’s having daily seizures, he eats everything. We truly can’t win with this kiddo!
Greyson was finally assigned a Registered Behavior Technician (RBT) in mid-April, and we have been SO blessed with such a wonderful team of behavior specialists for him. Our team lead was able to change Greyson’s approved hours, so we have a LOT more coverage over the summer, including when he is at ESY (extended school year) in July. Right now, there are two ladies splitting Greyson’s hours, one main member and an intern. We are doing roughly about 25 hours of behavior interventions with him this summer, more in July once he starts the school program in the mornings.
Roslynn also begins her summer school program at the end of this month. She didn’t fail 1st grade or anything like that, but we had the option of doing a summer program for her, to maintain her skills she has learned over the school year. Luckily her program is virtual, so when Greyson is in person doing his program, I can take her to the local Library and other places to do activities together that we wouldn’t typically get to do.
The conclusion of 1st grade, went out with a bang for Roslynn. We ended up at our local Urgent Care, the evening before the last day of school. She and Greyson were playing in the basement, and Greyson knocked one of our framed photos off the wall. The frame broke and at the same time, Roslynn kneeled down onto the broken frame, slicing a nice hole in her right knee. It wasn’t a huge injury, but enough to require two stitches to close her up. I was making dinner at the time, so I didn’t see the injury actually happen, but she was fairly calm and collected, especially when I told her I was taking her for stitches. She did get fairly dramatic at the Urgent Care, telling the doctor that she was “going to die” in the exam room, and that the doctor was “going to chop her leg off”. At one point, she also stated she couldn’t walk and needed a wheelchair to get out to the car. The doctor stated we were most likely the last patient of the day, and that Roslynn was her favorite person she saw all week. Roslynn did great, taking the numbing agent as a boss, and even watching the doctor stitch up her own leg. I guess it made for a good story on the last day of school.
I am now officially an “as needed” staff at work, so I can focus much of my time this summer on the kids. I went from about 20-25 hours weekly, down to about 10. A big cut, but when you factor in what childcare costs now-a-days, plus hiring a private nurse for G, it really is well worth it. I will go back to part-time in September, and have a similar schedule to what I had previously been working up until now. The best of it all, is that I can sit out on the deck and work on stuff while the kids play in the yard or in the sandbox. I’m also using this time to prepare Greyson for our trip in August. Finding a good form of communication for him, will allow us to have a more successful vacation, hopefully without any injuries or broken items. I am an obsessive planner, so you KNOW I already have a pinterest board of ideas for traveling with a special needs child. Hoping the vacation is more relaxing than work, since we will have zero behavioral help for him during the trip.
Most recently, we celebrated Roslynn’s 7th birthday with friends and family. Sadly, the rain forced many people inside, when we were planning that most of the party would happen outside, but it was a great party regardless. We had a local ice cream truck rented out for our guests to enjoy, rather than doing the traditional cake and ice cream. We did an ice cream themed party, which was a nice theme to kick off summer with. After some spills and a potentially dangerous pinata, the party was a huge success. The ice cream truck was a hit with many guests enjoying the surprise, and we even had some of the neighbors join in on the truck, basically to make up for the fact that we blocked off the entire culdesac with cars and a huge truck. All is forgiven with ice cream in my opinion. My mom would have been so impressed with how far Roslynn has come in a year. She would’ve also loved the rainbow sherbert that the truck offered. I hope that as Roslynn continues to celebrate more birthdays, she will continue with her fun, loving and gentle personality, and will continue to make all of her family, present and passed, proud.