Winter Storm and Cold!

Monday, January 19th:

Theo didn't have school today due to Martin Luther King Jr Day. Nurse Stephanie came over to help and spend time with him. Theo just adores her!

That afternoon Ms. Becca came over for PT. Theo worked really hard for her!

Tuesday, January 20th:

Theo went back to school today with Nurse Stephanie. He had a pretty good day, but got really upset in his stander. 

While Theo was at school I went to get my allergy shots (I only have to go every three weeks now!) and I listened into an HOA meeting.

That afternoon we took Theo to The Legacy Ranch to see Sherman and his friends. Theo did really well riding Sherman even though it was pretty cold!

Speaking of the cold, we are going to be on the northern edge of a HUGE snow and ice storm. Luckily, it seems like most of the snow and all of the ice will miss us, BUT we are going to have -30 to -40 wind chills on Friday. No thanks!

Wednesday, January 21st:

Theo went to school and I went to get a facial from my girl, Stephanie. It was fantastic and so relaxing!

Thursday, January 22:

20 years ago Kobe scored 81 points in one game! Do you remember that?!

Theo had a great day at school and later we had a Zoom with his Dietitian, Ms. Jeannine. We are going to change his probiotic since he's been on the same one for a few years now. The new formula is helping a lot with his acid reflux, but he is still struggling with constipation. We think he is still clinching, so we gotta get that figured out.

They cancel school on Friday due to the windchills. Makes sense! Theo wasn't going to be at school anyways because he has an appointment in Peoria tomorrow!

Friday, January 23rd:

When we left for Peoria it was -8 degrees with -30 to -40 wind chills! It was SOOOO COLD!

[Frozen river]

Once we got to Peoria we saw the Ophthalmic Assistant, Anthony. I told him that Theo has really been struggling to wear his glasses over the last year. He put the glasses on Theo and determined that the prescription is correct, but he thinks that the glasses are too small/narrow. We got these glasses around the same time that Theo really started to fight us on wearing his glasses, so that could definitely be a reason! I ordered new glasses and they should be here in a couple of weeks. Hopefully the larger size will be more comfortable for Theo and we can get him to wear them again! We will see a new Ophthalmologist, Dr Vahey, in July since Dr. Steve is officially retired. We are going to miss him so much! Theo's been seeing him since he was just a few months old 😭😭

Weekend:

Before the snow arrived Josh and I ran out to Staples while Theo hung out with Milto. I wanted to look into scanners so I can scan all the pictures from my baby books. 

That afternoon it started snowing and it didn't stop until Sunday night. Luckily, it was really light and we only got a couple of inches!

On Saturday night we watched Alex Honnold free solo the Taipei 101 building LIVE! My heart was racing the entire time! Spoiler alert, he made it to the top!

Go watch "Free Solo" on Disney Plus. It's the story of him climbing El Capitan without any ropes or support. It's wild!

[A nice dusting]

Even though we didn't get much snow it will still be below freezing here for at least the next two weeks! Most mornings will be -10 windchills. Don't worry, Theo has a lot of layers on when we send him out to the bus!

[I need one of these!]

Stay warm out there!

Theo's Second Overnight EEG at the EMU

Back in September 2025 we went to Lurie Children’s in Chicago to see Dr. Garcia Pierce (Theo's Epilepsy Specialist) and Amy Tenet (Neuromodulation) at the same time. We told them that Theo’s seizures are getting longer and with more jerks and he recently started having seizures that start in slow motion. Amy Tenet changed Theo’s VNS settings to go off for 7 seconds every 20 seconds. She also increased the intensity of the therapy. Dr. Garcia Pierce sent in orders for an overnight EEG which I was able to schedule in January 2026.

Over the next couple of months Theo's seizures were shorter, but they are still intense and he usually gets tired after a long seizure.

Then in early December 2025, Theo started having a new kind of seizure. It would start the same as the others. He would turn to the left, eyes and arms go left, and he would jerk in that position for about 20 seconds. THEN he arches or turns to the right and laughs or takes a big gasp of air. And then he turns back to the left and the seizure continues for another minute. So, the turn to the right and the strange laugh/gasp is new. After he has this kind of seizure he is exhausted and will fall asleep within a few minutes. And he'll sleep for about an hour. I sent a message to the doctor and Theo's medication was increased.

At 6:00 AM on January 12, 2026 Josh, Theo, and I headed to Lurie Children's Hospital to check into the EMU for Theo's overnight EEG. 

We got settled into his room and then the tech came in to get the electrodes hooked up.

[Not a bad view]

Anytime Theo had a seizure we would push a button to alert the nurse and the tech. The monitor and video camera would watch him constantly.

[He's happy dada is here!]

Theo was pretty content to be hooked up to the machine since it allowed him to lay down and play with his toys to his hearts content!

While Theo was doing his EEG I went to look for changing tables in the hospital. I found a few "kid sized" tables, but no more universal tables. So, as far as I can tell there is only one powered, height adjustable, adult sized changing table in the entire building. That's unfortunate. 

I called and got on the list at the Ronald McDonald House a few weeks ago. Sadly, the hospital is packed with pediatric patients right now due to the awful flu season. As a result, the RMH was also full. I booked a room at a Marriott a couple of blocks away from the hospital so I could walk there and not worry about parking. After dinner I left Theo and Josh at the hospital for the night and made my way to the hotel. I went to bed early and then at 3:30 AM I woke up to the sound of a garbage truck. I figured it was just driving by and collecting the garbage and the noise would end soon. It didn't. At 3:45 AM I got up and looked out the window. Below my window was what looks like a garbage/recycling center. Even with the room fan and my white noise maker on, the noise was too loud. Every once in a while there would be a loud boom and the trucks were beeping and there was constant noise from 3:30 AM until my alarm went off at 5:30 AM. It was awful. I was really hoping that Josh and Theo had a better night than me.

[Literal trash/recycling area just below my window]

At 6:00 AM I walked back to the hospital and found Theo and Josh in their room. Theo was getting his electrodes removed and was not very happy about it. But Josh said that he fell asleep shortly after I left last night and they just woke up right before I got there. So, that's good!

Theo was discharged after the electrodes were removed and we made the long drive home.

That afternoon Josh took Theo to see Sherman and his friends. I stayed home and took a nap since I had a migraine.

Wednesday, January 14th:

Theo headed to school with Ms. Jess and had an easy short day. 

After they got home we took Theo to the dentist so they could check out the staining on his teeth. Fortunately, it is just staining and the Dentist said that it's not concerning and it doesn't have to do with hygiene. She told us that since we have a 6 month cleaning already scheduled in March we can just come back then and they will get it all scrubbed off. 

After the dentist visit Ms. Jen came over and I showed her how well Theo is doing with his tooth brushing. The principles that we learned from the tooth brushing class are working so far *fingers crossed*

Thursday, January 15th:

Theo went to school with Nurse Stephanie. They had a great day!

While Theo was gone we got our piano tuned. I've been so busy lately that I haven't had time to play. But then last month I tried to play, but the piano had gone very out of tune! 

Friday, January 16th:

Theo had a great day at school! He used his eyegaze to say "snow" when his teacher asked him about the weather! He also went on the wedge, threw his pom pom, played games on his eyegaze, sorted silverware, and much more!

[Food play and iPad games]

After school Ms. Becca came over for PT. They have been working on rolling over and crawling.

Weekend:

Of course it was freezing cold this weekend, so we didn't really do much!

We did get a report from Theo's overnight EEG, but I can't understand most of it. So we have an appointment set up with Theo's epilepsy specialist on January 26th to talk about it.

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: