This past week was a pretty typical week for us. Theo went to school and therapy, Josh worked, and I ran errands and worked out.
Monday, December 5th:
Theo had another busy day at school. He has been working really hard!
We finally got the smell out of the Gazelle cushions, but rust showed up because I washed the parts too much. We took the Gazelle apart and scrubbed all the metal down with a rust remover. It was a pain, but I am hopeful that we are done dealing with all this mess and Theo can now start to use the Gazelle how it was intended.
My dad flew to Orlando to do some work on the rental house and condo. It was the day before his annual pass expired, so we told him he needed to go to Magic Kingdom. Disney also announced that they would be shutting down Splash Mountain in January and it will be closed for a year while they turn it into a Princess and the Frog ride. He went to ride Splash Mountain one last time, but when he got over there he saw how wet everyone was getting off the ride and decided against it!
Theo had five seizures today.
The next morning (Tuesday, December 6th), I put Theo on the bus and then sent a message to his Epilepsy Specialist. Theo had bloodwork done while we were at Lurie's last week and I was curious if she was going to change his meds based on the results. His doctor called me back immediately and we discussed Theo's bloodwork. She said his platelet levels were a little low which is likely due to a side effect from the valporic acid. She lowered that med and increased the Clobazam slightly.
While Theo was at school, Josh installed a ramp in our garage and we (I helped!) installed the eye bolt in the family room.
Theo's aid sent me a video of Theo asking for "more more" of his diary-free chocolate coconut yogurt. After school I took Theo to OT. He had three seizures today.
Wednesday, December 7th:
I put Theo on the bus, went for a run, and then worked on our family tree. I don't think I mentioned this before, but I've been working on Family Search and Ancestry to find out more about Josh's family history. While we were in Belgium, Josh mentioned that his Grandma's family was from there. I wanted to see exactly where they were from so I started to research. It's been pretty fun tracking his ancestors down!
About an hour before school was over, Theo's aid texted me to tell me that Theo just had three seizures in one hour and she was going to give him his emergency pill (per his Seizure Action Plan). I told her that was fine and to let me know how he responds to the pill. Theo came home on the bus and then took a nap. That emergency pill makes him pretty tired.
After Theo's nap we met with his feeding/speech therapist and his dietitian. Theo continues to gain weight, so we are decreasing his calories again.
Theo had six seizures today.
The next morning, December 8th, Theo headed off to school and Josh headed off to Naperville to deliver a bunch of paperwork to the corporate headquarters. His current project is wrapping up. We are very grateful that he has work so much this year (we NEED the health insurance), but it will be nice for him to have a break!
Theo and his class made these adorable Christmas decorations. After they were done decorating they went around the classroom and said who they wanted to give the decorations to. Theo said "dada" and when they asked him if "mama could have one too" he yelled, "DADADA!"
Theo had two seizures today.
Friday, December 9th:
Theo had another great day at school. His school OT and Speech therapist both sent me emails letting me know what they were working on at school and how well Theo was doing. After school, Theo's PT came over and helped us set up the Gazelle.
He looks so good!
The stander is super supportive, so Theo should be able to stand in it for a long time.
After PT we got a delivery for Theo's swing set. We hooked the rope onto the eye bolt and hooked the swing to the rope.
It works great! This is actually the same set up that they have at the PT and OT clinics.
We also got a pulley system, so we could lift Theo off the ground and into his wheelchair. The pulley system worked great to hoist Theo up, but there was no way to lower him down without releasing all the tension on the pulley. We decided that the pulley wouldn't work so we are returning it and we ordered an electric lift that we will be able to hang from the eye bolt.
Theo had three seizures today.
We had a pretty lazy weekend. Josh and I worked on a few things around the house and installed the new lift system to make sure it would hold Theo.
Theo LOVES his music. Sometimes he lays on his drums and iPad and also needs his Tonie close by. It's very noisy and can get a little overwhelming, but Theo loves it!
Theo didn't have any seizures on Saturday and only had one on Sunday.
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