Winter Break 2025 - Part I: Christmas

My parents came to visit us for Christmas! 

We decided to give them the full Chicago experience by visiting the Christkindlmarket in Aurora and then staying indoors the rest of the time because it's too darn cold here!

On Christmas Eve we went to get stinky cheese (raclette) at the Christkindlmarket in Aurora. The line was long but it was worth it! When Josh and I went to the Christkindlmarket in Chicago we got raclette too, but the Apline style one (includes a brat) was sold out. But they had it at the Aurora market today!

It was busy, but not too bad!

[Dad and Mom]

[I got these amazing Belgium frites (fries) with mayo and this awesome warm hat!]

We also got warm nuts, coffee cake, and Bob's Belgium hot chocolate! It was chilly, but it was actually very nice for walking around outside for a couple of hours.

That night we had Mexican food and then played Monopoly and watched The Muppet Christmas Carol.

Of course, my dad won Monopoly. He usually does 🤔

On Christmas morning we opened presents, FaceTimed with the family, and ate pigs in a blanket.

Theo got a baby Yoda, a book, a Tonie, and more lessons with Sherman!

I got a face massager, a hot stone massage, and candy!

Josh got a knife sharpening set and some games for his Switch.

[Facetime with Cason]

[Some members of the Neilson family... just missing Teagan, Tyson, Ty, Brodee, and Theo]

[KISSES!]

For dinner, Josh and dad made a prime roast!

It turned out great!

I hope you all had a very Merry Christmas! 

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?!

Brodee Photo Drop

Sara sent me a bunch of photos of Brodee from this year! Look how old he's getting! He's such a handsome, young man!