In the fall, Greyson was switched from a normal clonidine prescription, to an extended release dose. The pill had to be swallowed whole and would release the medications over the course of 24 hours. We thought that sounded great and that it would be a great change for Greyson, since the regular clonidine wasn’t really working more than 4 hours at a time. We attempted to have Greyson swallow the pills by hiding them in a variety of foods that he swallowed- ice cream, apple sauce, etc. Despite having minimal success with having him swallow the pills, he only became paranoid to eat ice cream since it had a pill in it that made him sleepy. Right around the beginning of the year, we informed Greyson’s psychiatrist that the pill swallowing wasn’t working for him and asked if there was an alternative to the clonidine. The doctor prescribed a patch that goes on a patient’s upper body (chest and/or arms) which would slowly release medicine into the bloodstream through the skin over the course of 24 hours. The first few days on this patch made Greyson very sleepy and lethargic. Gone was the extremely hyper, aggressive and irritable six year-old. We traded those behaviors for others that came with issues at home/school, such as excessive sleepiness, sadness and rashes from where the patches were placed on his skin, due to his adhesive allergy. We decided to trek through the negatives to try and find the correct dosage of the patch, which seemed to work itself out over the course of two-ish weeks.
Now, I have a love/hate relationship with Greyson’s insurance company. He gets Medicaid through the state, due to the cost of his treatments and medications. Like most government organizations and programs, the state wants to spend the least amount of money on items or to help this population. It seems that every month brings a new issue with the insurance company, such as not approving his life-sustaining seizure meds (that he’s been on for over a year), needing prior authorizations for certain doses and meds, requiring bloodwork to be completed and not having medication in stock when needed (though that’s the pharmacy’s fault). Aside from the issues with insurance, we finally have the medications approved for the next few months, so *hopefully* no more headaches with that for 6 months.
Greyson was also finally approved for 15 hours of nursing care per work week. After a year of fighting the insurance company, we were finally able to get some hours approved for him, which will help us out when Derek and I are working. The hard part now is to find an agency that will staff 15 hours a week, when most companies want to staff the full-time cases first. Small victory, but it’s better than no hours approved! The nurse would assist with feeding, bathing and monitoring Greyson, and would be approved to give him his seizure meds if needed. The bathing and feeding help alone is a huge help for Derek and I, so I’m hopeful we will find an agency with an opening.
2023 has started out on a much better note than 2022 did, with a trip to NYC to see Phantom of the Opera with Roslynn. Phantom was one f my mom’s favorite shows, and I wanted Roslynn to see it before it closes in April. Roz and I both hopped on the train in Lancaster, along with my sister and her daughter, Lexi. We met my younger sister and her husband and took the trip up to the city for a day. This was the first time on a train for both Roslynn and I, so I was a bit nervous. Luckily, my sisters and brother-in-law have taken the train to NYC before, so they knew where to go. We were able to meet up with my bestie, Brittany, who lives in NYC, and she took us around the touristy type places before we caught dinner at John’s Pizzaria across the street from the Magestic Theatre. After lunch, we got to the theatre and found our seats, right in time for the show. This marked my 4th time seeing Phantom, so I watched Roslynn’s reactions much of the show. My favorite was seeing her face light up when the chandelier is raised in the opening auction scene. Despite seeing the movie and stage production online, Roslynn was completely amazed. It warmed my heart seeing how happy and excited she got during the show. After the show, we went to times square and did some touristy stuff and then grabbed dinner and snacks from the train station food court. The train was quite full when we were leaving the city, so we weren’t able to sit all together in the two quad seat areas that we came into the city in. Though a bit scattered, I was able to sit with Roslynn until the train cleared up a bit, then she and Lexi had a blast talking, singing and eating candy until we made it back to Lancaster. We had a great time and despite my nervousness for the train, I would definitely do it again! I wish my Mom could have been here to see her grandchildren enjoy one of the first musicals she played for her daughters, but I know she was smiling down at us in the theatre.
Our lives have been chaotically busy since Christmas, the kids in school, Derek working a LOT (he was recently promoted within his company), me working part-time and managing all of Greyson’s services/appointments. Whew. It’s a lot to manage. Though I’m working about 15-20 hours per week, I am proud that I can manage the household, make homecooked meals, supervise the kids, participate in their therapy appointments, and wash/fold laundry on a regular basis. Though it’s not easy, I often wonder how much harder it would be if I didn’t have the help of Greyson’s behavioral team. The staff truly go above and beyond, and his behavior technician (we will call her “A” for short) spends 7 days a week with Greyson and our crazy family. She truly deserves a medal. I know that I could never hold down my job without her and the help she provides to us when it comes to Greyson. We have finally been accepted into the county case management program through a local agency/county BHDS program, so we also have a new caseworker that attends meetings for Greyson regularly, and she has been working hard to help us find resources for Greyson and his needs. We have a wonderful staff of women who continue to treat Greyson as their own, which makes all the difference in his care.
My goal for Greyson in 2023, is to become more aware of his surroundings and his safety. Currently, G has no idea when he is in danger. He does not see a problem with running into a road, or breaking a picture frame and chewing on the glass shards (yes this really happened). I wouldn’t mind him sleeping through the night again, which is happening few and far between these days. He is a great kid and I want everyone else to see how great he is, too, so hopefully he can continue with small outings within the community. The day-to-day tasks and events are stressful and exhausting, but I’m really hoping that we can have a breakthrough with his communication skills this year, too. Though I’m a month or so late, cheers to 2023!
Thanks so much for sharing your journey with all os us, Kate! My best to you, Derek, and the kids!! Miss you!