Monday, February 14th, started just like any other day. Theo had PT at home (since he would be at doctor appointments on Wednesday) and he went to school on the bus after his nap. About an hour after Theo got to school I received a call from Theo's school nurse. She said he had been in his stander playing in the gym with the rest of the kids. During that hour he had 8 "episodes," he kept falling asleep, his skin turned pale, and his lips, nose, and around his eyes turned blue. They took him out of the stander and took him to the nurses office where he could lay down and elevate his feet. The nurse sounded worried and asked me to come and get Theo from school. When I arrived at the school he was looking a lot better, but he was still pretty pale and the area around his eyes were blue. I took him home and called the Neurologist to see what we should do. The nurse was very helpful and she told me if he does that again to take him to the ER. She then said she would put him on the cancellation list for both the EEG and Dr visit and hopefully we can get his appointments moved up. Theo ended up having a great night and seemed fine especially after his complexion went back to baseline.
Josh and I don't usually do anything too fancy for holidays or birthdays and this year wasn't any different. Josh got me a box of all of my favorite chocolates from See's and I got him some things for his Jeep. Theo got some love from his cousins and Grandma and Papa!
The next morning, February 15th, while Theo was at OT, I received a call from the Neurology nurse. She said she was able to get Theo an EEG on Friday AND she was able to get us in to see the doctor the following Wednesday! YAY!
After OT I was talking to his therapist, Ms. Laura, about what happened to Theo at school the day before. She said that his episodes are starting to sound like Vasovagal Syncope. After looking into it some more it does sound very similar to what Theo is experiencing (especially if it's not seizures).
That afternoon Theo went to school and had a much better day!
On Wednesday, February 16th, Theo and I headed down to Peoria for back-to-back doctor appointments. First we saw the APN with the Developmental Specialist. She seemed very happy with Theo's progress and Theo even stood up "super strong" for her (with some support from mom). We went through all of Theo's upcoming appointments, procedures, and surgeries. She was very happy to see that we have been keeping up with our St Jude's appointments and if she could think of anyone else we should go see (who doesn't need more specialist?!) she would let me know.
Next, we went to grab some lunch before heading to see Dr. Steve with Ophthalmology. He was very happy with Theo's prescription and with how well Theo is wearing his glasses. We talked about all of Theo's upcoming procedures. He told me not to stress if Theo is having a hard time wearing his glasses during recovery from his double hip surgery. He told me, "I don't treat kids eye problems, I treat kids with eye problems." It was so touching and was exactly what I needed to hear. He has always been so kind to us and he really wants what's best for Theo.
That night we received a phone call from Theo's school informing us that we were going to have an e-learning day on Thursday due to the winter storm that was supposed to hit Thursday afternoon.
We spent the next day (February 17th) inside working on Theo's school work while we waited for the storm to arrive.
[Morning - Waiting for the storm]
That night the storm hit and it was awful! There were car accidents everywhere and people ended up getting stuck on the freeways overnight! There was a 100 car pile up on the 65 in Indiana AND a 100 car crash on the 39. The 55 going south was shut down too and it seemed like we were going to have to REALLY plan ahead if we were going to safely get to Peoria the next day for Theo's EEG.
Luckily, Theo's appointment wasn't until noon. So, we made a plan and left the house three hours before his appointment. The drive down actually wasn't too bad. We weren't able to take the 39 or 55 so we had to be creative and take the 80 west to the backroads. Luckily, the backroads took us through the forest and the roads were pretty clear.
[We had to get from the top right purple circle to the left purple circle. Kinda hard to do when the roads are closed!]
We arrived safely at the Neurological Institute 45 minutes before Theo's appointment. The EEG technician took us into a room and we got Theo comfortable on the bed. While she was putting the electrodes on his head he had an "episode." The technician immediately started to examine Theo and told us that she would detail what she saw and send it off to the Neurologist. She also said they would try to induce a seizure using a strobe light. Once she was done getting Theo set up, she left the room and we turned off the lights. Theo had a REALLY hard time falling asleep. He was beyond tired and just kept screaming. Josh was trying to calm him down while I sitting in the corner praying that he would just relax and take a nap. After about 30 minutes Theo FINALLY fell asleep!
After an hour the technician came in and told us the EEG was done and we could start waking Theo up. We told her that Theo didn't have an "episode" during the EEG, but we would stay until he did. She gave us about 10 extra minutes and then she started to take the electrodes off. Right after she removed the electrodes Theo had two more "episodes." UGH! So frustrating! I just want to know what those "episodes" are and how we can make them stop.
As we were leaving we noticed that the 55 was open, so we decided to go that way home. That was a bad idea. We should have just gone home the same way we came. The 55 was still a mess and there were a lot of cars and trucks in the ditch and the medium. The freeway also goes through a lot of cornfields so there was a lot of wind blown snow on the road.
On the way home the Neurologist called me. He said that there was no seizure activity during the EEG, but that Theo's EEG was abnormal (we already knew this). He said he didn't want us to worry and that we can talk more about everything at Theo's appointment next week.
[Happy birthday Emily! I can't wait to see you in May!]
Working on short sitting:
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