No Man's Land - The Wilderness

This week was a roller coaster of emotions for me with Levi. I usually have underlying anxiety when it is time for testing for him and that was no different for me this week. He had a scheduled EEG to look at activity in his brain. This will be the first one since his initial seizure in Nov 2019 and they wanted to compare the two.  Levi was a sweet patient and even though he didn't like the leads glued on, he took it. He even fell asleep as we hoped for part of it. We wanted him to sleep to be able to see activity during sleep as all 3 of his seizures have occurred at night while he was asleep. 

After the EEG on Monday, we meet with his doctor he said the EEGs looked similar and to continue the course were on. However when I read his note on Tues in the chart, it noted the "discharges" or activity during sleep were constant

. I began to spiral into what is happening during this time and what does that mean for Levi. I let it go by Wed but then his doctor called me while I was at work. Dr. Moosa said he had more time to look at EEGs and in fact this one was worse than the one 2 years ago during sleep. He began asking me about Levi's development and wanted to make sure there were no deficits. Of course this had me concern and upset. I was sad thinking that even though we don't see clinical seizures, he is having brain damage at night. His doctor asked we have a long appt with neurodevelopment for assessment to see if we need to try and treat the nighttime discharges. The appt is for Monday Feb 7th so prayers appreciated. Dr. Moosa still thinks Levi has focal childhood epilepsy and eh will grow out of it but it is so unknown with seizures, activity, etc that I am living in that space. He even said, "Levi is in no- man's land" when referring to his EEG activity. 

Later on Wed, I was doing my bible study through Exodus and the teacher, Jen Wilkins, said "How do we live in the wilderness as delivered, free servants of God?" And I need that conviction question. I am living in no-man's land or the wilderness or the unknown where I too will be prone (already am!) to wonder, question God, grumble, and be scared. We all have a version of this but God calls us to be press on knowing we have been ultimately delivered from death and free from the bondage of sin to serve Him. Please pray for Wes and I too. Levi doesn't know what is going on but Wes and I bear it for him. As you can see in pictures, he is enjoying a play date with his friend Adam, a hair washing/cut after EEG to get glue out, and still sleeping with us since the seizures occur at night. This has been 2 years now and not sure when it will change. Thanks!