Monday, March 4th:
HAPPY CASIMIR PULASKI DAY!
Theo didn't have school today due to Casimir Pulaski Day. Yes, it's an Illinois holiday and it's pretty much only celebrated in the northern Illinois 🙂
That morning a guy from Tribeca Marble & Granite stopped by to measure the newly installed vanity for the countertops. Those will be installed next Wednesday (3/13) and then our general contractor and the plumbers will come back in at the end of next week to finish everything!
Theo grew, so we were able to add another support piece onto his KidWalk. Now he has more support across his hips and his chest. He was able to stand for 10 minutes as opposed to just 5 minutes before we added the extra piece.
[Before and After]
After 10 minutes in the KidWalk we move Theo over to the Gazelle where he can stand for about an hour.
That night we had another round of storms. This time there were no tornados, but we did get some serious rain, lightning, and hail!
Theo had three observable seizures today.
Tuesday, March 5th:
Theo was very happy to go back to school today!
His super sassy personality came out today while they were reading a book about the sun. They asked each of the kids in the class how they feel about the sun and Theo made it very clear with his device that he "DOES NOT like the sun!" Gotta be a rebel!
We got Theo's professional school pictures back:
Isn't he soooo handsome?! Thanks Ms. Jess for making him laugh!
After school we took Theo to OT with Ms. Laura at High Hopes and then we went to The Legacy Ranch to see Sherman and Ms Kaylin.
Theo had five observable seizures today.
Wednesday, March 6th:
Theo gets to ride the bus twice on Wednesday, which he loves! He had another great day at school and after he got home he had feeding therapy with Ms. Jen. Theo ate a couple stars and had a bite of a beef pouch. About 45 minutes into the session Theo got restless, so we went and sat on the floor so he could stretch out. While we were on the floor Theo tried to roll over his right side twice. I had to help him, but he was very determined! I think he wanted to show off to Ms. Jen!
LeBron is growing on me, BUT I will never forgive him for destroying the Lakers on Christmas Day 2009 when we were at the game. Maybe bring the Lakers another Championship and we'll talk 🤣
Theo had nine observable seizures today including one that was 73 seconds long.
Thursday, March 7th:
Theo headed off to school while Josh and I ran some errands and got things done around the house. I printed off a list of things I need to pack for our trip to Iceland and what we still need to buy. Luckily, my REI dividend check arrived, so we have $100 to spend there. I can't believe we leave in a month! I'm so excited!
That morning I received an update on IL Senate Bill SB 2908 from my State Senator Sue Rezin's assistant, Renee Abraham. I don't remember if I've posted about this before so I'll recap here just in case:
Before our trip to Disney World in December 2021, I was trying to find out if there was an adult changing table in the O'Hare Airport (there is!). During my search I found a website called Universal Changing Places where they list out where you can find large adult changing tables are throughout the USA. I then found another website that list out which states have past and current legislation on adult changing tables. I found Illinois and saw that my State Senator, Sue Rezin, put forward a bill back before the pandemic. But it didn't go anywhere.
In October 2023 I reach out to my State Senator about this bill and I heard back from her assistant, Renee Abraham, who told me that the bill didn't go anywhere during the pandemic because nothing went forward unless it was pandemic related. Renee also told me that she too had a special needs child and she was the one who suggested to Sue that universal changing tables were something that are needed. If the legislation moves forward they want to call it "Sami's Law" after Renee's daughter!
In January 2024 Renee reached out to let me know that the legislation was filed and it will be Senate Bill 2908. On March 7th she reached out to me and told me that the bill was assigned to the executive committee and they are hoping it will get called next week. Senator Castro is the one who decides what bills get called. Renee told me that if I called Senator Castro and asked her to call the bill that that would help! I decided to call and leave a message. I then posted on Facebook and Instagram and got more people to call! The bill also has a co-sponsor who is a Democrat, so that will be helpful since it is now bipartisan.
In October 2023 I reach out to my State Senator about this bill and I heard back from her assistant, Renee Abraham, who told me that the bill didn't go anywhere during the pandemic because nothing went forward unless it was pandemic related. Renee also told me that she too had a special needs child and she was the one who suggested to Sue that universal changing tables were something that are needed. If the legislation moves forward they want to call it "Sami's Law" after Renee's daughter!
In January 2024 Renee reached out to let me know that the legislation was filed and it will be Senate Bill 2908. On March 7th she reached out to me and told me that the bill was assigned to the executive committee and they are hoping it will get called next week. Senator Castro is the one who decides what bills get called. Renee told me that if I called Senator Castro and asked her to call the bill that that would help! I decided to call and leave a message. I then posted on Facebook and Instagram and got more people to call! The bill also has a co-sponsor who is a Democrat, so that will be helpful since it is now bipartisan.
[Universal changing table in O'Hare airport terminal 2]
I really hope this bill moves forward! We need safe places so that all people can be changed with dignity and not on the floor of a public restroom!
After school we took Theo to OT with Ms. Laura. While Theo was on the swing there was a little baby running around doing therapy with Ms. Jodi. Theo was very entertained by him!
That night I joined a State of the Union watch party with Mo. He's one of my favorite journalist right now! He even made these awesome bingo cards!
Theo had six observable seizures today including ones that were 84 seconds, 93 seconds, and 61 seconds long.
Friday, March 8th:
Theo had another great day at school. He played Peek-A-Boo Barn and only had a few seizures.
After school we took Theo to PT with Ms. Cody. He was being a pill and wouldn't stop whining about the swing. We set timers for each activity, but all he wanted to do was swing. Theo managed to do all of his activities and then got to swing at the end of the session.
Theo had five observable seizures today.
Weekend:
We didn't do much over the weekend... go figure. Theo went in his KidWalk and Gazelle and we worked on stretching his hips and legs.
On Saturday night I went to see Marry Poppins at the local high school with Ms. Laura and her girls. As always, the musical was great and students are all so talented! I don't like the musical stage version as much as the Disney movie, but I get that dancing with cartoon penguins or having laughing tea parties on the ceiling just wasn't going to happen on a stage! The best part of the whole musical was Step In Time! Everyone was tap dancing and singing and they were so energetic!
And Sunday morning we sprung forward one hour.
And Theo got a haircut on Sunday night! It was getting a little long which caused it to tangle in the back. It's much easier to maintain when it's short.
[Theo's always mad after a haircut]
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