Hurry up and wait...

Today was more waiting...waiting for the right numbers, waiting for movement, waiting for waiting. As I said before...I am not great at waiting. Patience is not my strong suit.

You might have noticed that yesterday's blog post was really posted at 3 am this morning. I couldn't sleep. Last night Javad was having some tongue flicking that I was worried might be another seizure. It lasted for fifteen minutes, which concerned me. Although the doctors came in and told me that the neurologist didn't feel it was seizure activity, I couldn't shake my feelings. The end result was me falling into a hard sleep early and then waking up every hour until finally deciding to stay awake at 1 am. After a few hours, I was finally able to go to sleep, although it was not quality sleep, that's for sure.

Today was a day that involved more waiting. We got his phenobarb level this morning which was 51, still not in the sweet spot of 40 - 50, but getting closer. It was finally decided that Javad should receive a dose for today (half of the dose given a few days ago) and then levels would be checked. This, I believe, will become the ebb and flow of the next few days...give medication, check levels, give medication, check levels and so on. Once we reach the sweet spot, we will know the dose that will keep him there. Once we have the right dose, we wait...wait for Javad to wake up, wait for him to start being sassy, wait for our boy to return.

I realize that our journey is long, we will be doing a lot of "hurry up and wait" in the next few days, months...there will be times when we are angry that things aren't moving fast enough and then other times when we celebrate the small victories.

There has been thirteen years of our journey but this particular road is one where I am unfamiliar. I am used to feeling knowledgeable, empowered, and this path makes me feel weak and useless, feelings I am not comfortable with.

I am in a whirlwind of knowledge grasping...I stand within this perfect storm, but until them...we hurry up and wait.