This past spring I was asking for prayer for Kaki because she was experiencing what we thought were focal seizures. She was put on seizure meds and while that seemed to help her symptoms, it did not do great things for her behavior. She began throwing tantrums again and hitting us. We were not pleased and honestly we saw visions of last year in our minds and knew we could not go back to what we went through with her last summer. So, we decided that we would rather deal with the eye movements than deal with her behavior and took her off her seizure meds. It is not a decision we made lightly. It’s very difficult to make such decisions about your child. She has been off the medications for over a month now and her behavior is better. The neurologist has seen her a few times now and decided this was not seizures but nervous tics, which she does have some control over. So, there is no need for any interventions at this point. We are relieved. She is not super happy being out of school for the summer, she thrives on structure and routine and our house just isn’t set up the same way school it. She will be much happier when school begins again in August, but she is doing okay for now.
The rest of us are doing well. We are catching up on doctor/dentist and therapy appointments over this summer and by the end of the summer we will have had 48 visits in our family! Needless to say we are busy. We are also taking our first family vacation since bringing Kaki home and having Luke. We are going to visit the sharks at the beach next week. Don’t worry we will not be swimming in the ocean. We have a lovely shark free pool near our house. We are hoping for a drama free vacation with all of Glenn’s extended family joining us.
Overall we are doing well as a family and enjoying our summer, we hope you are too!