Back to School and Last Week of School... Maybe...

Theo went back to school this week. It is our last "normal" week before Theo's big surgery on April 12th.

Monday, April 4th: 9 seizures

Theo headed back to school and everyone seemed really excited to see him! After the bus picked him up at home I headed 45 minutes north to pick up three "Party Boxes" from Crumbl Cookies and took them to Theo's school. I wanted to thank everyone for taking such good care of Theo all year AND for taking care of him during his fainting/ambulance/ER adventure. They were all VERY excited about the cookies! I brought plates and knives and told them they needed to try each one since they were all delicious.

While I was at the school I ran into Theo's teacher, Mrs. DiLorenzo. We talked about Theo's plans for the 2022/2023 school year. Theo can do three years of preschool (he's currently in his second year) and one year of kindergarten OR two years of preschool and two years of kindergarten. Last time we spoke I told her that we were going to have Theo do another year of preschool with them. When I talked to her today she brought up a kindergarten program that was going to kickoff in Morris. She suggested that I get in touch with the program coordinator and we could find out more about the program. Mrs. DiLorenzo made it clear to me that they would LOVE to have Theo back next year, but if we think the kindergarten program would be a better fit than they would be supportive. 

I was very conflicted, so I sent an email to the coordinator, Kate, and we set up a Zoom call on Friday. 

I also sent Theo's seizure number to Neurology and they said they would look over them and let me know if they want to increase his medications.

[So super strong!]

Tuesday, April 5th: 14 seizures

The next morning Theo had OT and then he went to school. He had quite a few seizures at school, but he was no where near the emergency amount. I think that his seizures are triggered by sound and he gets over stimulated at school. 

I LOVE all the art they do at school! It seriously just cracks me up!

Wednesday, April 6th: 15 seizures

I ordered two Star Wars rugs from Ruggable. I was so excited for them to arrive! When the first one came I opened the box and stared at the rug for a few seconds. I   didn't know if I received the wrong rug or if the Star Wars referenced were so subtle that I was missing them. I went and checked my email and sure enough I received the wrong rug. Bummer.

[It's still nice, but not what I ordered]

A little while later the second rug showed up. I was a little nervous, but I got the right one! How awesome is this?! It's beautiful AND Star Wars!

I sent an email to Ruggable and they immediately apologized and send out the right order. Hopefully my 2 by 3' rug will arrive soon!

Theo had PT in the morning and then school and Feeding therapy in the afternoon. During Feeding therapy I talked to Ms. Jen and Ms. Jeannine about Theo's uptick in seizures since he went back to school. They suggested headphones so Theo could listen to his music or noise cancelling headphones so Theo could have some "quiet time." After therapy we tried on the headphones and Theo was so happy when he heard "We Don't Talk About Bruno." He didn't keep them on very long, but we will work on it!

Thursday, April 7th: 16 seizures

Thursday morning Theo had OT with Ms. Laura and then he went to school in the afternoon. After I put him on the bus I headed north to run some errands. I wanted to get some treats for Theo's bus drivers and the bus aids since they have been so great to Theo. I wanted to get them something fun, so I headed to Cups n Cakes to get some of their AMAZING macaroons. But this is what I saw when I arrived:

NOOOOOO!! Apparently they closed recently! I was so disappointed! Luckily, there was a Nothing Bundt Cakes across the street. I guess that will have to do.

[I got four of these. Pretty cute, huh?]

[Theo tried some vanilla hummus. He seemed to like it!]

Remember how we have a Harry Potter themed guest room? Well, I decided to add to it! I can't reveal my master plan now, but here's a sneak peak:

Friday, April 8th: 17 seizures

Friday was Theo's last day of school... for now. He is going to have surgery on April 12th, he'll be in a cast until May 17th, and school is done on May 26th. I'm not sure if he will be able to go back before the end of the school year and his teachers are assuming he's not coming back.

Theo's teachers, aids, nurses, and fellow students made him a book. It's so cute! They adore Theo and it makes me so happy!

Theo's bus driver got him these Sesame Street books. I'm excited to read them to him!

And his CNA, Ms. Jess, got him this Baby Shark book!

While Theo was at school, Josh and I had a Zoom with the Kindergarten program coordinator, Kate. 

She explained the program to us, answered all of our questions, and said that they would be happy to have Theo for the 2022/2023 school year.

Essentially the kindergarten program is a multi-needs inclusive classroom. Theo would be getting PT, OT, Vision, and Speech therapy everyday since those therapies are built into the structure of the classroom. He would go to school every day from 8:30 AM to 2:30 PM and they would bus him from our house to Morris (and back). They would bring all of his equipment (stander, Special Tomato, etc) over from his current school. They can feed him, give him medications, and he would be able to take naps. I asked about missed school days due to doctor visits, surgeries, and vacations and she said that would not be a problem (even our three week trip to Europe in the fall). It sounds like a great program and we are considering having Theo attend in the fall, especially if he is able to continue his private therapies. I am planning on reaching out to his private therapist on Monday to see if they will be able to accommodate Theo after school. 🤞🏻🤞🏻🤞🏻🤞🏻

That afternoon I received a call from Neurology. When I saw they were calling my heart sank a little. I knew they either wanted to increase his meds or they were concerned about his upcoming surgery. It was both. The nurse said that due to the stress surgeries can cause, they are going to increase one of his medications slightly. I told her that makes sense and we will increase it immediately. 

Saturday, April 9th: 8 seizures

Saturday morning we took a drive out to Ottawa so Theo could get his COVID test. This poor kid has had so many of these test and it never gets easier. The nurses are so kind and they gave him a toy car, but it didn't help. Theo was sad for a little bit, but once we started driving home he was fine.

A few hours later we got the results back: Negative. We are good to go!

We spent the next few days in quarantine at home. The doctor said that Theo should be in the hospital for 4-5 days post-surgery. I am packing for seven because I don't like surprises!

I had a guest check out of our condo on Saturday. Here is the review he left:

Ugh. This guest was there for a WEEK and didn't notice the elevators! There are actually TWO elevators in the building. My check in instructions give step by step directions on how to get to the condo which includes taking the elevator to the third floor. Ugh. I kinda feel bad, but it just shows that he didn't read my instructions like I asked him to. Oh well!

[I need this shirt for Theo]

[Literally me every time a new Star Wars book comes out!]

ANNNDDDD the Lakers aren't in the Playoffs. I'm sorry to say it, but it's time for a new head coach.

Sunday, April 10th: 10 seizures

We spent all day at home watching the Masters. I want Theo to spend as much time in his stander as possible since he won't be cleared to go back in it until he is 11 weeks post surgery. 

Monday, April 11th: 8 seizures

Josh went to work today while Theo and I spent the day packing for our trip to the hospital. The hospital doesn't have Theo's food or diapers that are his size so we have to bring our own. They take up a lot of room. We'll just leave one of the suitcases with the extra diapers and food in the car until we need it. The hospital rooms aren't very big, so it's best to use the car as a storage unit. 

The Lakers fired the head coach today. It's crazy that we've gone through five head coaches since Phil Jackson retired. I really miss him 😭😭

Ms. Cody, Theo's PT, stopped by today and brought us some treats and things to do while we are at the hospital. Thanks Cody! That was so kind of you!

I'm sure Theo's bilateral proximal femur rotational osteotomy and bilateral adductor and hamstring lengthening surgery will go well. It's the post surgery recovery that I'm worried about. Not being able to explain to Theo why he can't roll over and lay on his music is going to be hard. It's going to be a long and painful few weeks so please send thoughts, feelings, prayers, etc! We do appreciate them!