Monday, March 6th:
Theo didn’t have school today since it is Casimir Pulaski Day! Never heard of him, but apparently it’s a holiday here in Chicagoland. We headed to Ottawa for a few errands. First, we saw Theo’s pediatrician, so he could get a pre-op physical. After his physical we headed over to the St Elizabeth hospital for some bloodwork labs. Theo only had to be poked once, so we were all very happy about that!
Next we headed out to the Starved Rock Regional Center where Theo attended Toddler School. I contacted his old teacher and DT, Ms Kelly, last week to see if she had a kid that could use Theo’s Special Tomato chair that he had recently grown out of. She did! We donated it to the school, so they could give it to the kid that needs it.
That afternoon I took Theo to PT. He did really well, but he had a good nap so that helps!
[It's tight!]
Theo had three observable seizures today.
Tuesday, March 7th:
We sent Theo off to school on the bus, but just a couple hours later I received a message from his aid. She told that they had Theo in his stander and he was looking a little pale and tired. They checked his blood pressure’s which were fluctuating a bit, so they took him out of the stander. She said he seemed happy and was playing with his iPad. I told her that he had a blood draw yesterday, so maybe that was making him a little extra tired. Theo seemed to perk up a bit later in the day and then after school I took him to OT.
That evening Josh and I listened in to a webinar on VNS. We learn a lot of new things and are now even more excited for him to get the procedure next week!
The Lakers retired Pau Gasol's jersey. He deserves it! 👏🏻👏🏻
It's going to be a crazy last few games! Hopefully the Lakers can sneak into the 6th spot and avoid the "Play-In" tournament!
Theo had eight observable seizures today.
Wednesday, March 8th:
As I put Theo on the bus I told him that he was going to ride the bus twice today. Since he doesn’t have therapy until later on Wednesdays, this is the only day of the week where Theo can ride the bus home. Theo had a good day at school, but when the bus driver dropped him off she told me that he was coughing on the bus. We were hoping it was just acid reflux because he had not yet pooped today. But I sent a message to his feeding/speech therapist and told her that he was coughing and we could Zoom to be on the safe side. She agreed that was a good idea. We got Theo to poop and then we Zoomed with Ms. Jen and Ms. Jeannine. Theo was tired during the session and fell asleep.
Theo only coughed a couple times after getting home, so we assumed the pooping took care of the issue and put him to bed as we normally did.
Star Wars Celebration is taking place in London this year, so my brothers are coming to our house so we can watch the live stream together.
We'll have SWC on the big screen, YouTube reactions on the small TV, and Hogwarts Legacy set up on the medium size TV. AND we have a 7500 piece Millennium Falcon to build! The previous owners left a TV in the basement when they moved. We never used it and didn't even know how the picture would look. Josh wanted to test it out to make sure the video games would look good on it before my brothers came. He's such a good host!
Theo had four observable seizures today.
Thursday, March 9th:
The next morning Theo woke up and immediately started coughing. It was a deep, seal bark cough, so I called the school and let them know I was going to keep him home for the next two days. He was scheduled to have surgery on Tuesday and I was hoping that if I kept him home for a few days we could get him past this little cold and he would be ready for surgery. We started him on the nebulizer and improvised our own high-frequency chest wall oscillation vest with a massager and a pillow. We did those treatments ever four hours and also monitored his oxygen levels. I called our team at Lurie’s and told them that Theo was sick and we will probably need to cancel the VNS surgery. They told me to wait and see how the weekend goes, go see our pediatrician on Monday, and let them know after that if he is fit to have surgery. Josh called and made an appointment with Dr Dave at 10:15 AM on Monday.
I also called St Judes and cancelled the ultrasound and appointment with them that we had on Monday. I told them that he wouldn’t be better by then, but I would definitely reschedule when Theo was feeling better.
Theo was very, very tired today and slept a lot.
A carpenter came over today to check out our broken couch. He concluded that it was damaged during transport and delivered to us already broken. He said he would submit a report to Darvin and they would let us know what they want to do. He asked us if we liked the couches. We told him that we did and he suggested that we tell Darvin that we want him to fix the couches (“If I fix them they will never break again!”), they need to pay for that repair, AND we need to be compensated for the trouble. I thought that was a great idea!
Friday, Saturday, and Sunday:
Friday, Saturday, and Sunday were all very similar. Theo continued to sleep a lot and we continued to give him nebulizer treatments and oscillation therapy every four hours (even at 3:00 AM). His oxygen levels continued to be in the low 90s when he was awake and high 80s when he was sleeping.
[We bought tulips and orchids from Costco. I hope the tulips will bloom soon!]
[How pretty!]
[A tiny bit of snow!]
I gave Theo a COVID test, just to make sure. We didn't want to go to the pediatrician or the hospital without knowing if he was positive. Luckily, he was negative.
On Sunday night I packed our bags. I knew there was a chance that Theo could be admitted to the hospital after we saw the Pediatrician. It's always best to be prepared!
[Right on the edge!]
