Back in September 2025 we went to Lurie Children’s in Chicago to see Dr. Garcia Pierce (Theo's Epilepsy Specialist) and Amy Tenet (Neuromodulation) at the same time. We told them that Theo’s seizures are getting longer and with more jerks and he recently started having seizures that start in slow motion. Amy Tenet changed Theo’s VNS settings to go off for 7 seconds every 20 seconds. She also increased the intensity of the therapy. Dr. Garcia Pierce sent in orders for an overnight EEG which I was able to schedule in January 2026.
Over the next couple of months Theo's seizures were shorter, but they are still intense and he usually gets tired after a long seizure.
Then in early December 2025, Theo started having a new kind of seizure. It would start the same as the others. He would turn to the left, eyes and arms go left, and he would jerk in that position for about 20 seconds. THEN he arches or turns to the right and laughs or takes a big gasp of air. And then he turns back to the left and the seizure continues for another minute. So, the turn to the right and the strange laugh/gasp is new. After he has this kind of seizure he is exhausted and will fall asleep within a few minutes. And he'll sleep for about an hour. I sent a message to the doctor and Theo's medication was increased.
At 6:00 AM on January 12, 2026 Josh, Theo, and I headed to Lurie Children's Hospital to check into the EMU for Theo's overnight EEG.
We got settled into his room and then the tech came in to get the electrodes hooked up.
[Not a bad view]
Anytime Theo had a seizure we would push a button to alert the nurse and the tech. The monitor and video camera would watch him constantly.
[He's happy dada is here!]
Theo was pretty content to be hooked up to the machine since it allowed him to lay down and play with his toys to his hearts content!
While Theo was doing his EEG I went to look for changing tables in the hospital. I found a few "kid sized" tables, but no more universal tables. So, as far as I can tell there is only one powered, height adjustable, adult sized changing table in the entire building. That's unfortunate.
I called and got on the list at the Ronald McDonald House a few weeks ago. Sadly, the hospital is packed with pediatric patients right now due to the awful flu season. As a result, the RMH was also full. I booked a room at a Marriott a couple of blocks away from the hospital so I could walk there and not worry about parking. After dinner I left Theo and Josh at the hospital for the night and made my way to the hotel. I went to bed early and then at 3:30 AM I woke up to the sound of a garbage truck. I figured it was just driving by and collecting the garbage and the noise would end soon. It didn't. At 3:45 AM I got up and looked out the window. Below my window was what looks like a garbage/recycling center. Even with the room fan and my white noise maker on, the noise was too loud. Every once in a while there would be a loud boom and the trucks were beeping and there was constant noise from 3:30 AM until my alarm went off at 5:30 AM. It was awful. I was really hoping that Josh and Theo had a better night than me.
[Literal trash/recycling area just below my window]
At 6:00 AM I walked back to the hospital and found Theo and Josh in their room. Theo was getting his electrodes removed and was not very happy about it. But Josh said that he fell asleep shortly after I left last night and they just woke up right before I got there. So, that's good!
Theo was discharged after the electrodes were removed and we made the long drive home.
That afternoon Josh took Theo to see Sherman and his friends. I stayed home and took a nap since I had a migraine.
Wednesday, January 14th:
Theo headed to school with Ms. Jess and had an easy short day.
After they got home we took Theo to the dentist so they could check out the staining on his teeth. Fortunately, it is just staining and the Dentist said that it's not concerning and it doesn't have to do with hygiene. She told us that since we have a 6 month cleaning already scheduled in March we can just come back then and they will get it all scrubbed off.
After the dentist visit Ms. Jen came over and I showed her how well Theo is doing with his tooth brushing. The principles that we learned from the tooth brushing class are working so far *fingers crossed*
Thursday, January 15th:
Theo went to school with Nurse Stephanie. They had a great day!
While Theo was gone we got our piano tuned. I've been so busy lately that I haven't had time to play. But then last month I tried to play, but the piano had gone very out of tune!
Friday, January 16th:
Theo had a great day at school! He used his eyegaze to say "snow" when his teacher asked him about the weather! He also went on the wedge, threw his pom pom, played games on his eyegaze, sorted silverware, and much more!
[Food play and iPad games]
After school Ms. Becca came over for PT. They have been working on rolling over and crawling.
Weekend:
Of course it was freezing cold this weekend, so we didn't really do much!
We did get a report from Theo's overnight EEG, but I can't understand most of it. So we have an appointment set up with Theo's epilepsy specialist on January 26th to talk about it.
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