Monday, August 26th:
Today was insanely hot and steamy around the Chicago area, but we stayed inside most of the day, so it wasn't too bad!
I got Theo on the bus and then headed to the chiropractor. I was able to get a bunch of work done while Theo was at school. After school we went to OT at Thrive.
[Theo went in his KidWalk stander for 23 minutes!]
Theo had two observable seizures today.
Tuesday, August 27th:
Today records were broken around Chicagoland. It was stupid hot, but we made it!
After I put Theo on the bus I went to the Dermatologist for my yearly check up. All clear! I then worked until Theo got home.
We went to PT at High Hopes, but it was too hot to ride Sherman, so riding lessons were cancelled.
I'm still working on the Changing Spaces Campaign. After Sami's Law was passed we were able to add Illinois to the small group of states that have passed legislation about adult/universal changing tables.
I've been talking to a few of the other chapter leads, a couple people in Springfield, and some local advocates. I've been trying to come up with a plan moving forward. I think this issue needs a multi front approach: (1) Getting laws in place that require new construction to put in private restrooms with height-adjustable adult/universal changing tables (get states to adopt the new 2024 IBC), (2) getting laws in place that require established buildings that undergo renovations to put in height-adjustable adult/universal changing tables, AND (3) encouraging established buildings to put in height-adjustable adult/universal changing tables by offering grants. Of course there are going to be loopholes and enforcement issues, but I think a multi-front approach is the way to go!
I also created a Instagram page, so if you are on IG please follow us!
Theo had eight observable seizures today including ones that were 79, 68, and 144 seconds long.
Wednesday, August 28th:
After Josh went to work, Theo headed off to school, and I went to work in the basement. It was an early release day for Theo, so he got home around noon. He took a nap, which allowed me to finish up a few things in the basement.
That afternoon Ms. Jen came over for feeding/speech therapy. Theo wasn't interested in his pouch food, but he did really well with the yogurt bites!
After Theo went to bed I had a two hour FaceTime chat with Emily and Katey. We Marco Polo daily, but it's nice to talk face to face!
Theo had two observable seizures today including one that was 72 seconds long.
Thursday, August 29th:
Theo and I made the long drive back to Peoria today. This kiddo is still struggling with sleep and likes to get up super early, but he made up for it by sleeping on the way to Peoria and on the way home.
While we were in Peoria we met with Theo's new Developmental Specialist, Dr. Wendy Burdo-Hartman. We filled her in on all things Theo and she was very excited about Theo's new wheelchair. She even volunteered to do a peer to peer review if insurance denies the claim. We'll see her again in six months.
Theo had four observable seizures today.
Friday, August 30th:
Theo headed off to school and a few hours later I got a picture from Ms. Jess. She said that Theo told her he was cold and then fell asleep after she gave him a blanket.
[Oh my sweet boy!]
While Theo was at school I worked and then went to my yearly appointment with my allergist. She is going to increase my dose of mold and trees, but she said I can start coming in every other week. Yay!
After school we took Theo to Ms. Becca's house, so he could have PT in the pool with Ms. Cody. He still loves the water and looks super cool in his goggle shades!
Theo had six observable seizures today including ones that were 60, 73, and 64 seconds long.
Weekend:
On Saturday I went to the Naperville Farmers Market while Josh and Theo hung out at home. It was very crowded, but I got a lot of really tasty treats!
I can't wait for the NFL Season to start! Bolt up!
Josh and I had a three day weekend, so he fired up the grill and we had burgers and steaks. Everything was delicious!
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