Here I am: Midterms, NuMotion, Eye Doctor, and a Piano

Monday, November 7th:

I put Theo in his patriotic pants and sent him to off to school! He had a great day and worked very hard!

After school we headed to PT and Ms. Becca sent me this:

Theo DOES NOT like to lay on his right side (we still have no idea why), but he was doing it while on the wedge. YAY!

Josh drove back from Wisconsin today and made it back around the same time Theo and I got home! It's good to have him back!

Theo had two seizures today.

Tuesday, November 8th: ELECTION DAY! 🇺🇸🇺🇸 (and no school)

I hope you all exercised your constitutional rights and voted!

I thought this was very interesting:

Definitely explains why polls are becoming less and less accurate. Millennials can swing in either direction AND they don't like to answer their phones if they don't know who's calling. Good luck pollsters!

Theo and I went to see the pediatrician today for a check up. Theo's lungs sound great! Hopefully we can avoid those darn respiratory viruses until his lungs are completely healed.

That afternoon we went to see Ms. Laura for OT. Theo loves to go on the swing!

Theo didn't have any seizures today!

We had an appointment set up with NuMotion at Easter Seals on October 26th, but we had to cancel because Theo was in the hospital with pneumonia. Luckily, we were able to get another appointment quickly because of a cancellation! Yay!

On Wednesday, November 9th, Josh, Theo, and I headed down to Peoria to meet with NuMotion. Our goal was to get Theo measured and approved for an activity chair and a potty/shower chair. He has outgrown his current activity chair and even though we have a bath chair, it is getting a little dangerous to lift him out of the bath.

We first tried out the potty/shower chair. This chair is great! You can roll it into a shower and it can roll over a toilet for potty time. We are going to have to bathe Theo in our standing shower after it arrives, but that's okay because we want to be safe.

[It was nap time and Theo was not happy]

We then tried out a Rifton Activity Chair. This chair has a nice tray, foot rest, head support, and had the ability to raise and lower and recline. Fancy!

The PT noticed that Theo was leaning a lot, so he gave us this fancy collar to use. It offers more support than his ladybug neck pillow does.

While the PT was helping us with the chairs, the OT was asking me a bunch of questions about Theo. She will be writing a letter to our insurance about why he NEEDS these chairs, so the more information she has, the better. We talked about Theo's medical history, his diagnoses, and his medications. She then asked me about his mobility. "Does he crawl? Does he stand in his stander? Does he play with his toys?" I found myself answering "He used to" quite a bit. We know he is regressing, but it hurts to say it out loud. Theo used to stand in his stander for over an hour, now he can barely make it 10 minutes. Theo used to army crawl and roll over, and now he doesn't. Theo used to dig through his baskets looking for toys, but he doesn't anymore. Theo has always progressed (except for eating), but very slowly (we called it "Theo's Time"). But now he's going backwards. It's not his fault. His seizure meds make him insanely tired, so his motivation is gone. If he's not sleepy, he's tired. It may be worth it if these meds actually stopped his seizures, but they haven't. I'm really hoping that our appointment with the specialist at Lurie's will be able to help him.

The NuMotion PT and OT are going to submit everything for us and we should know in a few weeks if insurance will approve us for these chairs 🤞🏻🤞🏻

My birthday present from my parents arrived today! Isn't it beautiful?!

[Here comes winter!]

We are going to see Disney On Ice in February! I think Theo will love it!

[I can't even 🤦‍♀️]

Theo had one seizure today.

On Thursday morning we started getting reports about Hurricane Nicole and the damage she caused. Luckily, our properties in Orlando are fine, but there was a lot of damage out on the east coast. I hope everyone is okay.

I put Theo in a short sleeve outfit and sent him off to school. The high today is 75 and the high tomorrow is 45. We've actually had a nice autumn, so I guess I can't complain too much!

Theo had another great day at school and that night I went and saw Wakanda Forever!

Theo had two seizures today.

The next morning (Friday, November 11th), Theo and I headed back down to Peoria to see one of our favorite doctors, Dr Steve! He is so great with kids and is so caring. He checked out Theo's eyes (Theo fought back the entire time) and said everything looks great! He then asked me about Theo's seizure meds and what our next step was. I told him about our upcoming appointment with Lurie's. Dr Steve said that he can tell that the meds have affected Theo's personality and he misses his buddy 😭😭 He then asked me to give him a call after we meet with the Specialist. Everyone is really hoping they agree to move forward with the VNS surgery.

Josh wasn't able to come with us to Peoria twice in one week because he had to work AND supervise the acquisition of our newest treasure: a piano!

It's perfect, but very out of tune! We have someone coming next week to tune her. Can't wait to get back into playing!

Josh and I have been working hard on all things Theo. We are currently focused on four major situations:

1 - Getting Theo approved for VNS surgery, so we can wean him off his seizure meds

2 - Getting a handicap accessible vehicle, so we don't have to lift Theo into the car

3 - Getting a lift system for the home, so we don't have to lift Theo in the house

4 - Getting Theo's bathroom remodeled, so he can safely take a shower

Winning that 2 billion dollar lottery would have been really nice.

I called a few local dealerships that specialize in handicap accessible vehicles. I told them what I was looking for and she told me that they had a 2021 Traverse, side wheelchair entry, with 25,000 miles that was $82,000. I wanted to throw up. A used vehicle for 82K?! She then told me that was before taxes and fees. I made an appointment for us to go LOOK at their vehicles next Tuesday. I'm definitely not committing to anything!

I then got a hold of a medical supply rental company. We decided it would be a good idea to rent a lift to see if it would work in the house.

On Friday night the lift showed up and we took it for a spin around the house. Theo wasn't sure what to think!

It COULD work in our house, but we have a tight corner getting into Theo's bedroom. If he gets much longer the corner is going to be too tight and he'll hit is head on the wall. We are going to continue to brainstorm on this one.

Theo didn't have any seizures today.

On Saturday, Josh went to Menards and bought a snow blower. It'll be very helpful for when we need to clear a path for Theo's wheelchair to get from the house to the school bus. I'm not hoping for a snowy winter, but it would be nice to get our moneys worth!

[It's true 🤣]

That night I went to the local production of Newsies! It was put on by the middle school students (6th, 7th, and 8th graders) and it was so good!

While I was at Newsies, Josh and Theo had a guys night at home! They wrestled, played video games, and had pizza 🙂.

Theo didn't have any seizures today.

We woke up Sunday morning to this:

Our first official snow of the season!

Theo decided to leave his usual spot on the mat and go play on the hardwood floor. He was VERY motivated, but still needed help to get around. I tried to encourage him to army crawl, but he wanted to back scoot. We don't want to encourage back scooting, but I am just so excited that he was willing to move around that I allowed it!

Josh made Theo some dairy-free brownies. I put some super tiny pieces in his mouth and he seemed to like them. He just didn't like the process of me putting the pieces in his mouth, but once the brownie was in there he was fine 🤷‍♀️

I added my pins to my world travel map:

I know, Asia and Africa are looking a little bare. I've been to Egypt, which is technically in Africa, but I would love to go on a safari and go see Victoria Falls.

And I've been to Asia since we went to Ephesus, which is south of the Bosporus Strait in Anatolia. While we were in Istanbul we crossed from the European side (Thrace) to the Asia side (Anatolia) a couple times too. Anyways, I'd love to get over to Southeast Asia someday. Angkor Wat is high up on my bucket list!