SUDEP Action Day & No Kings Rally

Monday, October 13th:

It's a new week and I think it's officially Fall!

Theo didn't have school today so he hung out with Nurse Stephanie and we went to Costco.

That afternoon Theo had PT and OT and he worked really hard! He was very proud of himself (and we were too)!

Tuesday, October 14th:

I sent Theo to school with some of his favorite things that always make him happy. It's school picture day and we really want a good smile! Nurse Stephanie said that Theo had a few good smiles! I can't wait to see the photo 😁

After school we went to The Legacy Ranch for riding lessons with Sherman and his friends. Speaking of friends...

Josh loves cats and they love him!

That night I attending a book club meeting where we were able to Zoom with Supreme Court Justice Amy Coney Barrett! We read her new book and it was so cool that she was able to attend our book club!

Wednesday, October 15th:

While Theo and Nurse Monika were at school I took the van to Mobility Works. It was due for an oil change and the hydraulics on the van tilt stopped working. I was so worried it was going to cost an insane amount of money to fix and I told the mechanic that. He took a look and a few minutes later he told me that the switch that controls the hydraulics was turned off. The switch is in a weird place and most likely my knee hit it and turned it off. YAY! That's good news!

[Theo's school work]

Today is SUDEP Action Day. Sudden Unexpected Death in Epilepsy (SUDEP) terrifies me. Theo is high risk because of his drug resistant epilepsy, Lennox Gastaut Syndrome, nighttime seizure activity, and his unidentified neurocutaneous disorder. We try to lower his risk by making sure Theo never misses a dose of his meds, having safety features in and around his bed, making sure everyone knows how to administer his rescue meds, and using a nighttime seizure detector SAMi Camera.

We love our little boy and we will do everything we can to take care of him!

Thursday, October 16th:

Alyx came over today to put another coat of paint on the kitchen cabinets. They are coming together nicely!

I donated Theo's old pack-n-play today. It's been in the basement since we moved here and we haven't used it once. It's time!

Friday, October 17th:

Theo had a crazy day at school! He worked really hard and then he was able to meet some nice animals! He seemed pretty interested in the snake! I would be too!

While Theo was hanging out with snakes at school I went to donate blood. I had to cancel my appointment last week because I had a migraine, so I was glad I was able to go today.

In sports news, the Dodgers swept the Brewers and they are heading back to the World Series!

And BYU beat Utah! That's the only game I really care about every season 😜

On Saturday we were supposed to host a Garage Crawl, but due to rolling thunder storms it was cancelled. So, I decided to attend the No Kings rally.

I was shocked how many people were there in this tiny town! We were lined up all along the main road and I had to walk pretty far to find an open space. The rally was a lot of fun and I had multiple people ask to take pictures of my signs 🙃

On Sunday I went to see The Play That Goes Wrong with Laura at the Coal City High School. It was sooooo funny! I haven't laughed that hard in a while!

Decorating for Halloween

Monday, October 6th:

Today is our last day of "summer!" Tomorrow the temperatures are going way down and I'm going to get out the Halloween decorations.

Unfortunately, I had a migraine, so Josh helped Theo and nurse Stephanie get ready for school before he headed off to work.

At school they had a fire drill and Theo played in the ball pit. He loves to throw the small balls at everyone!

Alyx was able to get the big cabinet from the garage installed in the kitchen. It's all coming together!

We are going to have so much storage!

After school, Theo had PT and OT with Ms. Becca and Ms. Laura. 

Tuesday, October 7th:

It was a nice crispy morning, so after Theo left for school I added the Halloween decor to the Fall stuff.

[Fall decor]

[Fall decor]

[Fall decor]

[Fall decor - don't you just love him?!]

[Fall decor]

I don't like scary stuff, so Halloween around here is cute! Think Harry Potter and It's the Great Pumpkin, Charlie Brown!

[Halloween decor - aren't they so cute?!]

[Halloween decor]

[Halloween decor - Little girl ghost! Look at her bow and eyelashes!]

[Halloween decor]

[Halloween decor]

Theo had another great day at school. They learned about the scientific method and Theo said he wanted to be a Marine Biologist! 

After school we took Theo to see Sherman at The Legacy Ranch in the rental van. Theo was a little tired during his ride, but he pushed through.

Wednesday, October 8th:

Josh and I went to return the rental van since insurance will only cover $30/day and our van will be ready tomorrow. 

[Mums continue to be fluffy!]

At school they made pumpkin fluff. Theo seemed interested in it, so I decided to buy some dairy free cool whip and canned pumpkin. We'll see if he likes it!

[Playing with pumpkins, baking soda, and vinegar]

Changing Spaces Campaign was able to set up a meeting with the Senior Vice President of Business Development for SOVA (The public washroom division of Foundations) today. We voiced our concern that they were really pushing this wall mounted child sized changing table instead of a powered, height adjustable, adult size changing table.

VS.

The meeting went well and they said they would change and push the Ascent Universal Changing Table that they make. YAY!

After school Theo had feeding therapy with Ms. Jen. 

That night I beat Kingdom Hearts I! Such a fun game!

Thursday, October 9th:

After Theo and nurse Stephanie headed off to school on the bus, Josh and I went to Shorewood to pick up the van. She looks good as new!

I was selected for a random DOT drug screen so I went to do that and then I went to get my allergy shots. The harvest is almost over, so I should be able to spread out my shots soon.

At school Theo played connect four! They said he did great with his buttons and he won!

Friday, October 10th:

I was craving fudge, so I went to Dollinger's Farm to find some. They had a ton of delicious options and I had to restrain myself and only get three!

[Yes, I'm obsessed with my flowers!]

At school Theo had a dance party, played on the mat, and went for a walk with Ms. Vicki!

[So strong!]

Weekend:

Josh decided that it was time to take up golfing. He bought some old clubs from a local guy and he's going to take lessons. 

In sports news: BYU remains undefeated (6-0), The Dodgers and Brewers are going to the National League Championship (sorry Cubs), and the Chargers and Packers both won on Sunday.

We are a house divided! Go Dodgers!

Rental Van and Kitchen Progress

Monday, September 29th:

We didn't have a very exciting week, so I hardly took any pictures. 

Theo has been doing great at school! He gets so excited when I tell him that Nurse Stephanie is coming over or that he gets to go on the bus with Ms. Donna! 

After school Ms. Becca and Ms. Laura came over for PT and OT. Even though he'll fight them sometimes, he still loves them both!

That evening I listened to a work shop from Mo News about freedom of speech. It was great! If you want a great new source I highly recommend Mo News on Instagram! Or if you want a great recap of the day before, Mo and Jill put out a morning podcast every week day. 

Tuesday, September 30th:

Theo had another great day at school and Josh and I are working on wrapping up a long project. I'm bummed my office manager job will be over soon, but hopefully I can pick it back up in the spring. Josh is moving on to a smaller job, so he won't be needing an office manager anymore.

After school I took Theo to The Legacy Ranch for his lesson with Sherman and Ms. Kaylin. It was such a nice day that they had lessons outside. It's been a warm Fall, but I can't complain since the humidity has been so low.

Wednesday, October 1st:

After sending Theo off to school, Josh and I took the van to the repair shop. They said it could take two weeks to repair! Ugh! Did you know it cost $185 a day to rent a wheelchair accessible van?! And our insurance will only reimburse us for $30 a day. Luckily, I don't have anywhere to be this week, so we'll hold off on renting something for a few days.

Alyx stopped by to take out the cabinets. She is going to work on building the new cabinets and she should be ready to install them next week!

[All our appliances hanging out in the guest room]

I saw a wasp while I was waiting for Theo's bus. I don't like that they are snooping around.

Thursday, October 2nd:

Theo had another great day at school. We did hear that a couple sicknesses are going around, so hopefully Theo will stay healthy and the flu shot and COVID shot will protect him.

[Theo's an artist!]

Friday, October 3rd:

Nurse Stephanie said that Theo had another great day at school. He's been in his stander for 30 minutes a day and is doing really well being super strong! 

And he worked hard when Ms. Becca came over for PT that afternoon. 

[Apples stamps]

Weekend:

We had a pretty chill weekend. On Saturday, Theo was very tired and a little stuffy. We did extra shake-shake vest and nebulizer treatments which helped a bunch. On Sunday he was fine, so we are guessing he was having allergies with the harvest going on (aren't we all?!).

On Sunday, we picked up a rental van for me. I need a car so I can take Theo to Sherman on Tuesday and run some errands. We will return it on Wednesday. It is not wheelchair accessible, so Theo will have to sit in a car seat and we'll have to take his Convaid Cruiser with us instead of his Zippy (which is WAY too heavy to put in the trunk).

[My sweet boy]

[Probably Hogwarts, but if I got to be a wizard I'd totally go to Middle Earth!]