I’ve been meaning to write an update for some time, but I have found it difficult. Kevin has been doing better. He was hospitalized again in May amid concerns for his behavioral/neurological issues. We feared that his encephalitis was returning, so he was watched carefully, while medication changes were carefully made.
To date, Kevin is still legally blind, but he gets around just fine. I’m astounded by his resiliency. His vision has improved. He is seeing better out of his left eye, and he is able to see light out of his right eye. Previously, Kevin had no vision in his right eye, so this is a dramatic improvement. There is talk about doing an exploratory surgery for his eyes, but we have opted to wait as he has only been on Humira for a few months, and it takes about a year to see if the medication is working.
Emotionally, Kevin has been doing ok. We currently have COVID, but he seems to be doing ok. Kevin’s meds make him immunocompromised; unfortunately, he is too young for Paxlovid (by 5 months), but we are talking with his doctors to see if we can get an exception. He’s been to the ER twice now for stitches: one for a laceration that he got while fishing, and the other when he dropped a piece of broken glass on his foot. We are happy to be dealing with typical boy injuries! If you didn’t know that Kevin is visually impaired, you wouldn’t notice how he may have to lean in or out to view something, or when he accidentally runs into things. He does run into things often, but he accepts it and moves on. It’s good to see him extending himself some grace. He was able to attend a summer camp without any assistance, and he had a great time! He has put on weight, and his muscle tone and strength have rebounded. We’ve signed Kevin up for football, and he is very excited.
Violet is doing well, too! She had a very busy summer at drama camp, improv camp, and our church camp for teens, Big Stuf. She also volunteered at VBS (Vacation Bible School) where she loved working with the 5-year-olds. As we move forward into Fall, she will be entering the 8th grade, and will be participating in a teen drama program where they will work on performing Shakespeare’s MacBeth.
Peter and I are doing well, albeit we are often exhausted. We are still working on getting our house fixed, but we are still struggling with finding a contractor. We took the kids to the beach last week for a mini-vacation, and came home just in time for Kevin and I to get COVID! I sometimes feel overwhelmed, but I don’t find it helpful do dwell on the challenges. I think Peter and I make a great team, and I wouldn’t want to do this journey with anyone else.
We ask for your continued prayers for Kevin and the rest of the family, and appreciate all of the caring and love that has been shown to us. We are so very grateful.
