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!

Chargers Knock Out the Chefs and Josh Heads to Iowa

Monday, December 8th:

Happy 67th birthday, dad! What a great year to turn 6-7!

We had another snowy and chilly week here in Chicagoland! We had to bundle up more for the bus stop, but that's okay! Josh was off work this week too, which was great!

[Theo playing with "snow"]

[I saw these at Target... yes, we need all of them!] 

After school Ms. Becca came over for PT. Theo has been having fewer seizures, but they are more intense and he usually needs a nap after he has one. Unfortunately, Theo has been having seizures right after he gets home from school. This makes him very sleepy/crabby for PT.

Tuesday, December 9th:

Theo and Nurse Stephanie headed to school while I went to get my allergy shots and Josh worked on his Jeep. Josh heard that there is a Coating Inspector out in Iowa that wants to go home. So, Josh volunteered to take his spot next week. Ugh. It appears the crew out there is only working five days a week, so Josh will leave for Iowa on Sunday night and then he'll come back on Friday after work. It's only a three hour drive, so that's not too bad. Hopefully work will be done next Friday and he won't have to go back out there the week of Christmas.

After school we took Theo to The Legacy Ranch to see Sherman and his friends. Theo has been doing really well with his lessons and he is so super strong!

Wednesday, December 10th:

Josh, Theo, and I drove to Peoria today to see Dr Yuan with Pulmonology. Theo has been doing great and hasn't been sick *knock on wood* yet this season. Dr Yuan listened to Theo and he said to keep doing what we are doing and we'll see him in six months.

After we got home I went to see Zootopia 2! It was sooooo good! I loved it just as much as the first one! And just for fun here are some pictures of Luke and I at Zootopia in Shanghai Disney:

Thursday, December 11th:

Theo and Nurse Stephanie went back to school today after having yesterday off. Nurse Stephanie said that Theo has been doing really well with his eye gaze and says some pretty funny things!

Josh got new tires on his Jeep today. It's looking like we are in for a rough winter and his other tires have about 80,000 miles on them, so they are over due. Tires are expensive, but they are worth it if it's going to help keep Josh safe!

Friday, December 12th:

While Theo was at school I went to Jewel, the Sourdough You Know cart, and The Hive to stock up on some food. It's soup season and you gotta have sourdough to go with your soup!

We also had a Zoom with Ms. Jeannine, Theo's Dietitian. I filled her in on how Theo's appointment with his GI went a few weeks ago and we talked about Theo's poop... like usual! We are going to start giving Theo pear juice and see if that will help with his constipation. I also told her that I think Theo is clenching too. Apparently that is not an uncommon stage for kids to go through. It's a control thing - like Theo's oral aversion. 

And right on cue, Theo had a big seizure right before Ms. Becca arrived for PT. He did pretty well for most of the session, but then he literally fell asleep in her arms. Poor guy. His seizures are so intense. I'm sure they are exhausting for his mind and his body.

Weekend:

It was FREEZING cold this weekend, so we stayed inside for most of it! Ms. Jess came to watch Theo on Saturday and Josh and I went to brunch.

[Theo has decided he doesn't know how to army crawl anymore - so I'm trying to motivate him]

On Sunday, we watched the Chargers beat the Chefs and Grandpa Philip scored a touchdown! It was a great day!

Josh made it safely to Iowa. We'll miss him this week, but he'll be home on Friday!

Beginning of the Triple Dip

This week we had the first of three Polar Vortex that will be visiting us in the next three weeks. And between these Polar Vortex we will be getting snow! It looks like we are in for a cold and wet winter!

Monday, December 1st:

My parents headed home today before more snow and cold arrive. The original plan was for them to stay this week so Josh and I could go to NYC. A few weeks ago I decided it would be too chaotic to go to NYC in the winter (even though I really want to see the Rockefeller Christmas Tree). I am so glad we decided not to go. Between the ground stops and cancelled flights in Chicago and New York, it would have been a disaster just to get there.

Thanks for spending Thanksgiving with us!

[This is what I look like if I happen to leave the house]

Theo and Nurse Stephanie went to school and Josh went to a small job just 20 minutes away. Hopefully he will work for the next couple of weeks and then he can go to see his family up north for Christmas and New Years.

After school Theo had PT and OT with Ms. Becca and Ms. Laura. He had a pretty big seizure right before they arrived, which made him tired, but he powered through!

Tuesday, December 2nd:

Nurse Stephanie said that Theo did really well at school today. He has been using his eye gaze a lot and has been saying some pretty silly stuff! When they asked him what he is supposed to wear in the winter he said "shorts" and a "shirt" and he called pants "nasty!" This kid!

After school we took Theo to see Ms. Kaylin and Sherman at The Legacy Ranch. Sherman was acting like a diva and they said it was probably because he just got his nails done! Oh boy!

That evening I had a Zoom call with the other chapter leads from Changing Spaces. We talked about social media posts and outreach. I love learning from these ladies who have been doing this a lot longer than I have! We are trying to come up with ways to demostrate why powered, height adjustable, adult-size tables are the best and we need to promote them. One of the leads came up with the idea of doing videos so people can see how hard it is to lift a large child or adult onto a mounted table. I think that's a great idea!

Wednesday, December 4th:

I realized that I didn't post pictures of my Harry Potter Village yet! So, here it is along with some of our other decorations!

Thursday, December 4th:

It is stupid cold today! The first Polar Vortex of our Triple Dip has arrived!

I bundled Theo up really well and sent him and Nurse Stephanie off to school. It was so cold that even Josh wore extra layers!

All the "wraps" came out this week. I hardly ever listen to music, so all of my top things were podcast!

And for YouTube, I guess I consume a lot of Marvel, Harry Potter, and Kingdom Hearts. Yep! Sounds about right!

I got this note from Theo's teacher. I am so glad to hear he is doing well at school!

Friday, December 5th:

It warmed up today into the low 20s, so I decided to run to Costco. I needed to get a bunch of candy for Theo's Christmas gifts. 

While I was there I got a chicken bake and I got Order 66! It's a Star Wars reference :-)

I got the kids in Theo's class this fun velcro catch and toss game and all his teachers, therapists, aids, nurses, school admins, the resource officer, and bus driver gift cards and a bunch of delicious candy!

[Almost done!]

After school Ms. Becca came over for PT. Theo did a really good job! We tried to get him to hold and apply chapstick, but he was NOT into it!

Weekend:

It was too cold to go anywhere, so we didn't. I really wanted to go to the local Christmas Market, but I didn't want Theo to be miserable and cold. 

Theo did really well using his eye gaze to play his shark game!

BYU lost their game, so their season is over! Bummer. They had a great year though!

[Yep!]