Last Week Before Winter Break

Monday, December 16th:

Today was Theo's final dose of Valproic Acid and Levocarnitine *knock on wood*

Over the last six weeks we have been weaning him off of Valproic Acid and slowly increasing his dose of Epidiolex. We had a ton of left over meds, so I took them to the pharmacy to dispose of.

Josh, Theo, and I went to Peoria today for two doctors appointments. First, we saw Pulmonology. He was happy to see how Theo was doing and wants us to keep up with his respiratory therapy and his current meds. Next, we went to see nurse Amanda with the ENTs. Theo still has a tube in his right ear. She said that as long as it's not causing any issues then they won't go in and remove it. We will see her again in six months. 

Between appointments we went to take pictures and do a few videos for a changing tables study that we are involved in. We showed how hard it was to lift Theo up onto a table that is not height adjustable. And we also showed that this table will soon be too small for Theo.

Theo had five observable seizures today.

Tuesday, December 17th:

Theo went to school today while I went to get my allergy shots and run some errands. After school we took Theo to PT. 

Theo had six observable seizures today including one that was 90 seconds long.

Wednesday, December 18th:

While Theo was at school I received a message from the nurse that he had been clustering really badly. We decided that it was best for me to go get him from school and take him home to rest. We already had plans to get bloodwork for his Epilepsy doctor, so after his nap we went to the lab.

[Poor kid bruises easily, just like his mom]

Theo had 10 observable seizures today including one that was 90 seconds long.

Thursday, December 19th:

Theo went back to school on Thursday, but he was really tired and started to cluster again. Ms. Jess was able to get him down for a nap so that helped. 

Ms. Jess ❤️❤️❤️

That night I had to fight to get a room at the Tokyo Disneyland Hotel. Well, fight was kinda an exaggeration. The server wasn't overloaded like when they released the Vacation Packages. So, I was able to get us a night in a triple room!

[How cute is this room?!]

I am going to try again in a few days to get two more days. If I am successful then we will have five total nights at Tokyo Disney Hotels (two at the MiraCosta and three at the Disneyland Hotel) and four days at the parks (two at Tokyo Disneyland and two at Disney Sea).

Theo had 10 observable seizures today including one that was seven seconds shy of three minutes.

Friday, December 20th:

It snowed on Theo's last day of school before winter break!

And Theo went to see Santa again. He was still not amused 🤣

Josh brought me home some of my favorite chocolates from See's!

Theo went to PT and got a cool light present from Ms. Becca and Ms. Cody!

[Theo's Christmas art]

Theo had nine observable seizures today.

Weekend:

Over the weekend I went to see Sonic 3 (which was hilarious) and then I braved Costco.

Josh finished packing for his trip to Alaska and it makes me really sad to see these packed bags in our room.

[Looks like we will have a warm Christmas!]

Josh went to the pipeyard and got this cool aerial shot!

VOGM.org did an article about Theo and Changing Spaces. It was so nice of them to spotlight us!

And speaking of articles! The local FOX new station in Wisconsin did a huge piece on the chapter lead, Sarah, and her son. It also highlights our Ohio chapter lead, Jennifer! Check it out!

We got Theo's official second grade school photos! How adorable is he?!