CHOP, Camphill, earrings.

Edda ran a fever of 100.3 on Tuesday after her vaccination and she stayed home and did virtual school. She was a little tired, but not too bad. On Thursday, we headed to Philly to see Jeremy’s college friend Dr. Marsh who is a pediatric neurologist up at CHOP running the Rett Clinic there. We set our alarms for 5:30, but we woke up early because, Edda, full of surprises, had a seizure about 15 minutes before our alarms and was covered with blood.

Turns out she had a bloody nose at 3 am and then a seizure at 5 am. So we all waited for the seizure to pass and then got everyone up and showered and I threw the linens into the laundry and we headed to Philly for a 10:30 appointment. It turns out I was at CHOP 5 years ago for a check up for Edda as part of the natural history study and I completely blanked on the visit. The person doing the intake clearly remembered me and I was embarrassed to admit I had no recollection of it. So we updated everything for the history study and then we had a long appointment with Eric which was fantastic and totally worth the drive up to Philly. We have a coherent plan and objectives to meet and things to try which balances Edda’s seizure control with her ability to enjoy herself most days. The Keppra (and all seizure meds) blunt Edda’s joie de vivre and there is so little she enjoys anyways that medicating her for relatively infrequent seizures is always a trade off. Jeremy, honestly the star of the appointment, showed all this video documentation of Edda’s seizures which allowed the neurologist to say – yes, that for sure is a seizure – focal, with Chapeau de gendarme features – or no, that most likely isn’t a seizure – which was fantastic for us. (I on the other hand, totally forgot her seizure tracking calendar that’s hanging on the wall in my office and the names/doses of all her medications that she’s been on in the past – Trileptal? Lamictal? can’t remember.) Eric basically said there is no evidence of seizures in the Rett population damaging their brains, so if you can tolerate a three minute seizure while she’s asleep in bed once every three weeks and her seizures are not going to hurt herself physically – you might not want to medicate her for that. We are not going to discontinue the Keppra right this instant, but we have a plan for the next 3-4 months which might have her coming off of the Keppra and seeing what happens. (Because right now we have no idea if the Keppra is doing anything at all to her seizures and if it’s doing nothing, I’d rather her not be taking it).

Then we went to Kimberton, PA (about an hour outside of downtown Philly) where Bob and Katherine are building a house on the property of an intentional community.

We spent a lot of time talking to the project manager and one of the construction folks and then taking lots of photos and measurements. We also Facetimed Bob and Katherine in Berlin to do a more in-depth tour for them. Never in this pandemic did I think we’d visit the house before B &K, but that’s the pandemic for you. It’s a lovely house and a lovely community. I hardly ever see disabled elderly people living their best lives. Ok, maybe hardly ever is really truly never, but I met lots of them here and they were living their best lives. I might have almost cried. Ah, B & K’s new house is close to cows, but Vince lives closer to cows. Never did I think so many of my family members would live within a stone’s throw of 100 cows, but you never know where life will take you.

Edda made it back to in-person school on Friday. It was a very successful first week of in-person school. We missed a lot of the days, but I think the teachers did a great job under incredibly difficult and stressful circumstances.

Vince, flush with birthday money, got both ears pierced at some hipster shop in downtown Davis. We said – awwwww, just like your father! I fell in love with Jeremy, he had 7 ear piercings. ‘tho I’d like to believe that Jeremy was the vanguard in 1995 with male ear piercings. See? Jeremy can be hip even though he seems totally regular now. Oh! And I found a new adjective for me. I’m amasian! and vince is 1/2 amasian!

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