Day 12

Today is a quick update. As far as I know, I haven’t had any seizures. I think a lot of things that have been troubling that I’ve been experiencing are related to the amount of medication I’m on. I have updated my surgical and neurological team. My neurologist wants me to come off any extra centrally- acting medication. I’ve been off pain medicine for a while now, outside of Tylenol. Recently, I was approved to add ibuprofen. With this transition, I’m trying to get off the muscle relaxer for my jaw, as this is the last centrally acting medication. Next week I have several appointments: my surgical follow-up, psychiatry, speech, therapy, and neurology.

The recovery has been strange. Sometimes I feel very normal and can carry on a conversation. If conversations are going on longer than 45 minutes to an hour, I get incredibly fatigued and feel like I need to get away. This doesn’t seem abnormal for me anyway; I’m rather introverted. Instead of feeling anxious, now I feel pain in my head. Perhaps that’s related.

My surgeon was mostly correct. I do feel comfortable with being around my toddler most of the time. I enjoy his company. His conversations are simpler and don’t cause me to feel overwhelmed or terribly over-stimulated. However, his energy and tantrums are difficult to tolerate. It is hard for me to step back and not put him in the highchair or set him on the potty. I’ve tried to integrate our routines with doing things on the ground, like eating on a towel on the floor, or getting a diaper on while I'm sitting down. It has been with mixed success.

As I try again for independence with him, I feel like my risk of injury goes higher.

I am not able to lie flat without my head getting swollen and causing pain.

Because of this, I can’t lie down with him to go to bed. Because of this, I haven’t really tried to put him to bed yet, and I haven’t felt the need to wear my safety helmet.

I think this will change in the next few weeks, and I will update on how that goes.

While I have the help. I keep trying to step away and take moments for quiet time to relax. It’s very difficult for me, and I will keep trying.