Edda had another seizure yesterday, so our hopes that those two seizures within six hours of each other on Feb 12 were a fluke do not seem to be true. We still have that neuro appt at Children’s in a few weeks we are going to. We might also follow up at CHOP at their Rett Clinic now that we know that we know the people running it. We are also going to start tracking Edda’s periods to see if the seizures track with monthly hormone shifts. I gotta figure out a period tracking app. I haven’t had a period in something like 14 years via my IUD, so I’m out of practice. Edda’s school seems very chill about the seizures, I was worried that they would all freak out and want to put stringent protocols in place, but I got a calm call from her teacher saying that Edda’s seizure happened at lunch that lasted about a minute and that the para was great and on top of making sure she was safe and that it made him sad to see and that Edda was a bit worn out and sleepy now.
Edda lost her guanine pendant from her necklace in the past few weeks. As you might know, she is missing a single guanine from her DNA which messed up a really important protein. So I replace it with jewelry. And she keeps losing it (well she’s almost 16 now, we’ve probably gone through 4 sets of necklaces) which seems symbolic to me, and I keep replacing it. So I got a new shiny cytosine.
We closed out the week with red, white and blue day for #WoottonStrong!
Vince was not feeling well on Friday and stayed home from school. He’d been preparing a lot for Mr. RM on Friday night (not that he was running for Mr. RM), and had to miss that. He was bummed. He seems better today.
I’m bummed (upset) that he’s going to probably have to pick a college sight unseen. Jeremy kind of admonished me to think that we’d have him travel during the pandemic if schools were closed, but I was like – just to see it! Even if the campus is closed! What about the cities? Couldn’t he get a feel for Minneapolis or Toronto? Vince took it in stride and said it’ll be fine, he’s watching videos, though he acknowledged that the promo videos might cherry pick highlights. Like in Minnesota – only beautiful days and short sleeves are shown in the videos. Hmmm…
We had Edda’s IEP meeting on Thursday, I came bearing six tubs of Clorox wipes. The IEP meeting was uneventful, sometimes they surprise you with things that you weren’t expecting (like cutting services), but this time it was a keep everything the same meeting.
You can look at this local news clip of my hospital prepping for COVID-19. I’m not sure it is completely reassuring. We do have cases now in MD. And I know that one of the confirmed cases visited the Villages in Rockville about 3 miles from the house and about a mile from Edda’s school. I’m nervous and not so much at the same time.