6/11/25

 I woke up very groggy with Jiminy snuggled up next to me. We had an uneventful slumber, just the way I wanted it. Jiminy was due for his anti-seizure medication at 7:00 am and I gave it at 6:50.

6 minutes later, he was on his side having a seizure. Ethan left for work very upset. I assured him that I thought the seizure was due to him being due for medicine and it hadn’t kicked in yet.

Still, Ethan is worried about his “child”. Yesterday we talked about how devastating it will be if Jiminy dies. While hard, Ethan shared that he would have trouble existing without him and knows he will sink into a deep depression.

We talked about how valid that would be. I remember my depression after my Toonces died suddenly. Phineas was hard, but easier in a way because he made the decision easy for us. Grief is grief. Ethan shared he doesn’t want Jiminy to die until he is 20….or super old like that.

I told him that there could be a possibility that something happens and he passes away young. We signed up for this fragile little guy and didn’t have any idea how hard it would be to keep him safe.

I keep playing the sheer panicked moment in my brain as I came around the corner expecting Moe and seeing my little angel on his side. Ugh!

Here is the bright side. Jiminy has been seizure free since this morning. His light continues to shine for our family and he brings us pure joy daily. He is tough. He is determined AND he doesn’t have to drive a vehicle or work at a job, so a seizure isn’t setting him back too much.

One of Ethan’s rejection medication value still came up low. He was on 2 mg daily. The doctor has increased it from 2-3, 3-4 and now from 4 to 5 tablets daily to get him into the therapeutic range. This has been over the past few months. 

Ethan is scared of taking 5 mg because he at one point he developed painful mouth sores as a side effect. I told him if he has a hint off that feeling that we will report and back off on that dose.

We will get there. Small and steady adjustments.