Last week – Edda had a series of seizures (about 5 in the span of 1.5 days) that landed us back in the ER. As you may recall, this happened last year, about the same time, but that time, I didn’t quite understand how to deploy Edda’s rescue medications and between last year and this year, we’ve used the rescue meds maybe 2 or three times to control her seizure clusters well, but they didn’t work last week. What happens is she has seizures every 6 hours or so. Each seizure, on their own, doesn’t seem too too terrible, but each time, she bites her tongue really hard and then it doesn’t have time to heal when the next seizure hits and then she stops being able to eat or drink or take her oral, baseline seizure meds. We had to take her to an ADULT hospital which is not my favorite, but I headed to my hospital (Holy Cross) – I had a friend working in the ER that day so I felt good heading in (by our car). They were great – they did exactly what I wanted which was to put in an NG tube and gave us a 3-day benzo bridge (which they consulted with CHOP and Children’s who did it last year). It’s weird to walk into an ER and ask for what you want, but that’s where we are. The entire thing took about 6 hours which wasn’t bad. Edda came home with the tube – this was Thursday and we kept it in until she could eat well on her own and pulled it out on Sunday night.
While she was at home recuperating, I was able to go out and play Pokemon Go with Sheela.
Edda made it back to her day program on Monday morning.
And now I feel like the holiday stuff is starting. I’m buying gifts for Secret Santa – I always enjoy how few gifts I buy. I’ll buy fewer than 10 gifts this year, I like to keep gift giving to a minimum. Our big spend, like it is every year, are year-end cash gifts to the support staff at Edda’s program/transport and at-home caregiving.
I went to the volunteer appreciation night at Main Street. The food was yummy and this is another volunteer Caitlyn who hung out with me!
I will tell you that the founder of Main Street intimidates me for various reasons, but maybe we’ll be friends soon enough.
In an effort to keep consolidating, I’m looking through our boxes of memorabilia and tossing things that aren’t important. I totally kept this photo of my cousins.
My boxes of crap – becoming fewer boxes of crap.
I still have a lot.
But this? I found these kitchen/bathroom items carefully wrapped among the boxes and stored for over 20 years, perhaps it doesn’t need to be included with the photos. Once, we had movers move our stuff because that service came with a new job – when we opened one of the boxes, we found out they had packed a basket of trash. lol.
