New Rockstars, Super Bowl, and Happy Birthday Luke

BIG NEWS: Josh passed all three of his CWI tests! So he is now a Certified Welding Inspector! I am so proud of him! I know these test were very hard, but all those late night study sessions paid off! CONGRATS JOSH!

Late Sunday, February 6th, night we received the following email from Theo's school district:

A judge issued a TRO against the Governors executive order for mask wearing. Of course, the Governor immediately appealed and things can change again. But as of right now, mask are optional in schools. I sent Theo's teacher an email and asked her to continue having Theo wear his shield while at school.

Did you know that the second week of February is Feeding Tube awareness week? If you are reading this then I am sure you are aware that Theo has a feeding tube. Awareness is important!

On Monday, February 7th, I Zoomed into the Windsor Hills condo HOA budget and bimonthly meeting. I never say anything on these meetings, but it's good to keep updated on what's going on in the community. While I was listening to the Zoom, I worked on my handwriting. Cursive is hard.

Theo's aid sends home these journals everyday. They have started keeping track of his "episodes" which I appreciate. 

Theo's 100th day of second-year preschool!

Theo's aids and teachers are still working with Theo on his feeding, which I also appreciate!

We do love penguins!

Maybe Theo is upset that adult Emperor penguins are taller than him!

My boys watching the Winter Olympics!

Theo's feeding therapist and dietitian suggested trying chocolate hummus. It's delicious and Theo seems into it!

[So messy!]

Always wrestling and having fun!

Okay, okay, I'm a huge nerd. We all know that. I follow a lot of nerdy channels on YouTube. One of my favorite is New Rockstars. They tend to focus on Star Wars and the MCU, which I love. When I saw that some of them were going to be in Chicago for a live show I figured I should go and support them!

On Friday, February 11th, I drove up to Thalia Hall. It's a super old theatre with VERY small seats. Luckily, I was able to grab a bench seat that had some leg room. 

The New Rockstars crew was a lot of fun! They ended up doing a trivia contest, which was hilarious! They went over funny MCU theories and got some help from the audience (including a guy dressed up as Emperor Palpatine 🤣🤣).

The last segment they did was Pokemon vs Star Wars swear words. It was so funny and the cast members didn't do very well, but I knew them all! Aren't you proud?!

Right at the end of the show I started getting a bunch of text messages from my condo guest that had just checked in. She was having a hard time opening the balcony door and seemed to REALLY need to go outside. I thought it was super strange, especially since it was 10:00 at night, but we were able to walk her through it and they were able to get on the balcony.

I ended up leaving at intermission since NR part was over and I didn't know who Face Jam was. Plus, I'm old and and it was past my bedtime! Thanks New Rockstars for the fun night out! And thanks to Josh for hanging out with Theo. I don't get to go out very often and it was much needed!

The next day (February 13th) was Super Bowl Sunday! 

We had buckeyes, made nachos, and watched anxiously for the Dr Strange and Kenobi trailers to drop!

[Mine!]

[Josh's nachos. Can you tell by all the jalapeños?!]

We didn't get a trailer for Kenobi, but we did get one for Dr Strange! It's going to be crazy!

[Coming May 25th! The 45th anniversary of A New Hope!]

My little brother Luke is turning 30 on Monday! I can't believe this is happening since I am only 29! Andie threw him a party on Super Bowl Sunday and it looks like they had a great time!

Happy birthday Luke!

Thanks for all the fun times (and sorry the collage wanted to cut your face off *eye roll*)!

On Sunday I finished the first of the four Marathon challenge! Boston was a lot o fun and the trainer was amazing. Now onto New York! I also started Rivs' new series between my long marathon runs. I'm so glad he is back and making new content!

Theo's Episodes: Seizures? Dizzy Spells? Old Reflex?

When Theo was young he was able to lay on his right and left sides without any issues (although he would need help getting there). When he was six months old (February 2018) he had his first embolization on his brain aneurysm. Between his first and second embolization (September 2018) I noticed that Theo liked to lay on his left side and favored it highly over laying over his right side. After Theo’s second embolization I only saw him lay on his right side a few times. After his third embolization (October 2018) Theo had a three week long hospital stay, stopped eating, and lost a lot of muscle and fat. During his long recovery we noticed that if we tried to put Theo on his right side or if we tried to roll him over his right ear he would scream and cry (and sometimes vomit). It would take a long time for him to calm down. No one could ever explain this to us and Theo couldn’t tell us what he was feeling. 

Over the last few years we have been working a lot with his Physical Therapist and Occupational Therapist to get him to roll over his right ear. It has been a huge struggle. Anytime we encouraged him to roll over his right ear or even lean to the right during sitting he would have the same reaction: screaming and crying. 

However, over the last few months we have been really pushing Theo and he has been responding greatly. We can now roll him over his right ear without him crying. He will even lay on his right side, but he won’t put his right ear to the floor. 

At the beginning of October 2021 we noticed that Theo would sometimes lift his left arm into the air and turn sharply to the left when he was laying on his back. 

If he is standing then he will throw his arm out and turn to the left. 

He would hold his position for just 2-3 seconds before going back to what he was doing. We thought it was possibly a reflex reaction. During the reaction his eyes would get large and his body would stiffen. If I am close to him when it happens I can see that his eyes move quickly from side to side about three times (nystagmus). I’ve seen his eyes get like this when he is spinning in a swing. He is completely responsive during these reactions. I don’t know if he is experiencing temporary dizzy spells and this is related to his issues with rolling over that right ear. We went and saw the ENT in November (just a month after these episodes started) and they found he had a clogged left ear. So could these dizzy spells be related to his clogged ear and his equilibrium being off? We are hoping these episodes will stop once that ear tube gets replaced in March. Our PT and OT believe this is all related and that his vestibular system may be waking up.

We wanted to wait until after Theo's ENT procedure in March before we reached out to any more doctors about these episodes. We were hoping that the episodes did have to do with a vestibular or ENT issue and they would stop after his procedure.

I received a call from Theo's school the other day and it was the district nurse. She said she had been working with Theo over the last few days and she is very worried about these episodes and that they looked like seizures. She told me that kids can remain alert and even continue playing (like Theo does) during seizures. There are so many different types and they can all present differently. I told her our plan was to wait until after Theo had his procedure with the ENT to reach out to Neurology, but she said we shouldn't wait. I trust her judgement and so I immediately reached out to our Neurologist and sent him pictures and videos of Theo.

The next day I received a call from the Neurology nurse. She said that the Neurologist is not "too concerned," but with Theo's extensive history he feels that it would be a good idea to do an EEG (wake and sleeping). Even though Theo's EEGs always come back "abnormal" they feel that if he has one of these episodes during the EEG they may be able to see what it is. 

I was able to get an EEG scheduled for early March and we have an appointment with Theo's Neurologist a week later. Fingers crossed that we get some answers!

Snow Days and Tummy Issues

While Theo was at school on Monday, January 31st, I received a phone call from the school nurse. She said that Theo threw up and he was very upset ("big tears!"). I told her that Theo was having "volume issues" with his food and that he has been having a hard time since we increased his food intake. I told her that I would come get him, but she said it was okay and he could stay since he had a change of clothes. Ugh. Those poor nurses! They truly are angels! 

[I love all the art they do at school!]

On Tuesday, February 1st, Theo went to OT. Ms. Laura said that he had a "sensory day" where he really wanted a lot of sensory input. 

While Theo was at school, Josh and I went shopping for a small cabinet where we could put our upstairs printer (right now it's on our dining room table). We went to Bob's Discount Furniture and found a few options.

We decided to go with this little gem and it is perfect!

We were warned by the local news that we could get 6-9 inches of snow on Tuesday night. So, school was cancelled and we had an e learning day on Wednesday, February 2nd. 

[Watching Sesame Street Podcast]

[How many Baby Yoda's does Theo have?!]

[What do you have that starts with the letter q? A QUILT!]

By then end of the storm on Wednesday, we ended up with 10 inches of snow!

Since the roads were still pretty nasty, we had another e learning day on Thursday, February 3rd.

[What do you have in your house that is purple? A LAKERS JERSEY!]

By Friday morning the roads were pretty clear, so Ms. Becca came over for some PT. Theo did so great short sitting on his Squeezie! 

[Theo sang a lot of Encanto during his session]

My favorite trainer has a new program coming out on Monday, February 7th. I did his "Flash Challenge" to get ready for his new series. I also started the Boston marathon series since I have four marathons to run by the end of March!

Theo has to decorate a heart for Valentines Day. He was not in the mood today to color.

I love sports! I think it's because I'm not athletic, so I enjoy watching other people do amazing things with their athletic bodies. I really enjoy watching the Olympics from my comfortable couch with my big bowl of hot soup. It's the perfect cold weather activity!

Josh's knee is still pretty banged up from his snowmobile adventure.

Did you know what I'm famous?!

[Yep! That's me in an archaeology book! Super famous!]

February 28th is Rare Disease Day:

VOGM.org is selling some really cool merchandise. Check them out!

Josh has been in and out of the office over the last few weeks (just an hour or so here and there), but on Monday he goes back to work full time. These last two months have been a lot of fun having him home 24/7. I will especially miss our lunch dates and all the errands we were able to run together while Theo was at school. Our savings account took a little hit and we have a pretty big trip coming up this year, so I guess it's time to go back to work and make some money! Thanks, Josh for working so hard so I could stay home with Theo!