Theo Avoids the Flu and Josh Visits Family

We decided to keep Theo home from school this week so that he doesn't get sick before his EEG. Flu cases are at their highest level in 25 years. Unfortunately, Theo's nurses were sick too, so it was just the two of us at home all week!

Josh spent the week in Minnesota and Wisconsin visiting his family. It sounds like he had a great time!

[Josh and his sister, Jess]

I spent a lot of my week on the phone with various people from Cigna. We are fighting for Theo to stay with his current Feeding/Speech therapist, Ms. Jen. Of course, the insurance company just doesn't understand how specialized she is and how our non verbal child with a severe oral aversion needs therapy.

Good news:

More good news:

I got the draft back for our amendment bill to Sami's Law. It's looking really good! Now we gotta fight for it!

2026 has had a rough start. I hope it gets better from here.

Sports Bummer:

Both the Packers and the Chargers lost. Bummer. The Chargers really struggled with keeping their quarterback safe. Maybe next year we'll have a better o-line and I won't have to watch my boy, Herbert, get knocked down so much.

Happy New Year!

Happy New Year!

The week between Christmas and New Years is always a blur! 

After the thunderstorms we got a nice dusting of snow and a blast of cold!

On New Years eve we got Thai food, cookies, and ice cream! It was a great night!

Ms. Jess got Theo a Baby Yoda light for Christmas! Thank you!

Josh and I were able to get in a date night before he headed to Minnesota and Wisconsin to visit his family. 

We also did a class about toothbrushing. Theo has really been struggling with his oral aversion. He gags to the point of vomiting anytime we come near him with the toothbrush. We have also notice a dark stain on a few of his teeth. So, here's the debate: Dental care vs Oral aversion. Do we just force the toothbrush so we can keep his teeth clean? OR do we take a step back and try to establish some trust so that his oral aversion will lift? I know that some medications can affect your teeth too. UGH! I sent a message to his dentist with a picture of Theo's teeth, so hopefully we will hear back from them soon!

I had to put on Theo's favorite song and Zoom in in order to get a picture of the stain. This kid!

On Saturday Josh headed to Minnesota to stay with his dad and Julie. I decided to pull Theo out of school next week so that we can keep Theo healthy before his overnight EEG. It was a tough call, but everyone agrees it is the best move.

Playoffs are set! Go Chargers and Packers!

This is wild:

Merry Christmas 2025!

Monday, December 22nd:

Josh worked in Iowa on Monday and Tuesday, so Theo and I hung out at home. We watched The Sound of Music and anytime Julie Andrews was singing Theo kept making oooooo-ing sounds. I don't know if he was impressed or trying to sing or both! It was adorable!

Monday afternoon Ms. Laura and Ms. Becca came over for PT/OT. They had Theo open his present from Ms. Laura. Theo loved smashing the paper into balls and throwing them to me! 

He got a giant Baby Yoda from Ms. Laura! He loves it!

Right side laying on Baby Yoda!

[Chargers are heading back to the post season!]

Tuesday, December 23rd:

I sent a message and the video of Theo's new seizure to Theo's Epilepsy Specialist. She is out of the office until after the holidays, but the on call doctor increased one of Theo's meds to help combat the new seizure. Theo is now maxed out on all of his seizure meds. Hopefully his team at Lurie's can come up with a new plan after his overnight EEG in January.

Theo had his 2025 final ride with Sherman today! We are excited to continue lessons next year!

Wednesday, December 24th:

We stayed at home for the rest of the week in order to keep Theo safe. The flu is running rampant and we can't let him get sick.

On Christmas Eve we made nachos and watched The Muppet Christmas Carrol!

MERRY CHRISTMAS!

We had a nice quiet Christmas at home. We opened presents, ate pigs in blankets, and FaceTimed with my family! It looks like everyone had a great day!

[Light from Grammy Suzi]

Pictures by the tree (a family tradition):

[Josh got a decanter and a couple of video games]

[I got a new laptop!]

[Most of the family]

After Christmas:

We spent the rest of the week watching football!

[BYU and Chargers games]

BYU won their Pop Tart Bowl game! YAY!

[Poor Grandpa Phillip! We still love you!]

[Theo cuddling with Baby Yoda!]

Josh headed back to Iowa for work on Sunday night. After he left a nice line of storms pushed through the area. There were two tornados south of us and we had a pretty nasty thunderstorm!

I hope you all had a very Merry Christmas!

Solstice, Josh in Iowa, New Seizure

*Trigger Warning: Seizure Activity. I will be posting two videos of Theo's seizures towards the end of this post. They are intense, so please use discretion. 

Monday, December 15th:

Theo and Nurse Stephanie headed off to school for our last week before Christmas Break!

I went to donate blood and I wasn't able to do the "Power Red" double donation like I wanted to since my hemoglobin was too low. Ugh! But I was still able to do a regular pint donation.

If you can and are willing, please donate!

After school Ms. Laura and Ms. Becca came over for PT/OT.

Tuesday, December 16th:

Theo and Nurse Stephanie had a great day at school and after school I took Theo to see Sherman! Theo was sitting up super strong and did a great job!

Wednesday, December 17th:

Nurse Jess and Theo went to school while I headed to Laser Away to get my Clear and Brilliant facial. The nurse went up to a level 2 with the laser, but due to the numbing cream it didn't hurt too bad. It looks and feels like I have a sunburn, but I was only red for a few hours!

After school Theo took a nap and then Ms. Jen came over for feeding/speech therapy. Theo played with cool whip and chocolate syrup and did a really good job getting some of it in his mouth. We talked about Theo's clinching and his hatred for teeth brushing. She recommended a few resources for me, which I will be looking into!

Thursday, December 18th:

After a few warmer days, we were bracing for another deep freeze. But first we were going to get some rain! 

[Here it comes!]

After the rain the temperatures dove and everything became icy! Luckily, we had no plans to leave the house!

The storm hit Josh in Iowa first and he sent me a video of the pouring rain while he was IN the trench! Don't worry! He got out!

Friday, December 19th:

It was a very cold day, but a warm up is coming and we are NOT going to have a White Christmas! After everything we've dealt with we aren't even going to have a White Christmas. Bummer.

Theo and Nurse Jess went to school for a half day. They played BINGO and watched Christmas movies. It sounds like a great day!

Josh came home Friday night, but they need him back in Iowa for a couple of days next week so he'll head back out Sunday afternoon.

[Goats?!]

Weekend:

This is an example of Theo's typical seizures. His body, arms, and eyes all get pushed left and then he jerks in that position for 60-90 seconds.

About 10 days ago Theo had a different kind of seizure. His body, arms, and eyes all get pushed left and then he jerks in that position for 10 seconds. THEN he turns right (or arches back), smiles (or gasps), and then goes back left and continues the seizure for another minute.

It's very strange. Of course, I sent a video of it to his Epilepsy Specialist to see if she had any thoughts. These seizures also make Theo super tired. He usually has to take an hour long nap after they happen. It's heartbreaking. Theo has a 24 hour EEG scheduled in January, so maybe we will get more answers then.

Theo took a four hour nap on Sunday. I hope he's not getting sick.

The Packers lost to the Bears in a nail biter, but the Chargers won!

December 21st is the Winter Solstice! YAY! It's going to start getting lighter again!

[This happens WAY too often]

[I can't tell you how many times I've given directions to a lost family]

Here's my list of movies I need to watch during the Christmas Break:

Elf

The Santa Clause

Spirited

Muppet Christmas Carol (Christmas Eve tradition)

Christmas Vacation

Home Alone

and, of course, Lord of the Rings

Did I miss any?!

Josh headed back to Iowa for work on Sunday night. He'll be back Tuesday night!