First Meeting with Representative Briel

Monday, November 3rd:

Theo struggled to wake up Monday morning. That hour time change is pretty brutal on kids! He was up really early and then went back to bed for an hour before Nurse Stephanie came over to take him to school.

While Theo was at school the guys from Access Elevator came over to reinforce the beams in the attic, so that we could get a lift system installed in the family room. They finished pretty quickly and it's all ready for the installers!

After they left I started getting an awful migraine. Luckily, Nurse Stephanie and Theo were almost home. I took some meds and took a nap. Thanks to Nurse Stephanie for holding down the fort and letting Ms. Becca in for PT while I was napping with my TheraICE.

Tuesday, November 4th:

Theo was still tired today, but he pushed through and had a good day at school. 

While he was gone, Alyx came over and put the handles on our new large cabinet and we talked about what to do with the cabinet where the wine fridge was.

She is going to take out the other lower cabinet and put in one large cabinet. I think it'll be more functional that way!

I love how everything turned out!

[So much storage!]

After school we took Theo to The Legacy Ranch for his lessons with Sherman and Ms. Kaylin. Theo was definitely showing off and sitting up super strong!

Wednesday, November 5th:

After I sent Theo and Nurse Stephanie off to school I went through my handy binder and made sure I had everything in order before I headed to Ottawa. 

A little background: I tried reaching out to Senator Rezin (my state Senator who introduced the bill) about expanding Sami’s Law, but I was not able to get a hold of her. I called, I emailed, and I sent messages through her website. I even reached out to other Reps and Senators to see if they could get a hold of her. No luck. I then reached out to a few Senators and Representatives who I was told were “friendly to the special needs community.” I had a few responses and Representative Murri Briel (IL House 76th District) wanted to meet with me!

I went to Ottawa and met with Representative Briel, Meta Mueller (her Chief of Staff), and Meredith Schilsky (the Deputy Chief of Staff).

The meeting went really well and Representative Briel was very excited about expanding Sami’s Law. We went through the original bill and talked about all the items that were cut out. We talked about other states that have passed similar laws about adult changing tables. We also discussed trying to get a grant program going and what it would take to get a statewide building code passed. I know it’s a tall order, but they all seemed really excited about it!

Representative Briel told me to reach out to as many people as possible and have them start spreading the word that legislation will be coming.

After the meeting I sent them my "Wish List Bill" which consists of all the best part of state bills from Alabama, Arizona, California, Maryland, Minnesota, New Hampshire, Tennessee, and Rhode Island. I also sent them what I had found on Building Codes and states that have grant programs. While I was working on all that I reached out to a few of my contacts and I already have a few people reaching out to their Senators about being a co-sponsor. I am so excited about expanding Sami's Law and making Illinois more accessible for everyone!

Thursday, November 6th:

After I sent the kiddo off to school I went to get my allergy shots. My eyes are SOOOOO itchy right now! It's because of the harvest and I am so ready for it to be done!

On my way home I swung by The Hive to get a few things and to buy a few dinners for people in need. I am so glad to see that our community is helping out and I am grateful for the opportunity to donate.

Friday, November 7th:

Theo and Nurse Stephanie headed to school while I went to get a facial from Stephanie at Baum Beauty (located inside Tru Salon & Spa). She always does a fantastic job and my face felt so hydrated! 

Nurse Stephanie sent me a picture of Theo's eye gaze. I guess he needs a hug from Josh and Papa!

["Hug me dad Grandpa Grandpa"]

Weekend:

Josh decided to trim and wire my beautiful bonsai!

We got our first snow of the season (it melted pretty quickly)!

Theo is still tired and just wants hugs!

And BYU lost their first game of the season. Bummer!

And guys... guys... 🤦‍♀️ 

Sleepy Theo and Halloween

Monday, October 27th:

Theo's school had "Spooky Fun Week" in the lead up to Halloween. Each day they were supposed to dress up a certain way to participate. Today was "Roll out of bed and Rock the Halls: Wear your warm cozy pajamas" day. I recently bought Theo a bunch of warm, flannel pajamas, so this was perfect!

Unfortunately, I didn't get a picture of him in his cozy pjs, but I did get his school picture! How cute is he?! I love his wavy hair and big front teeth. He just kills me! Thanks to Nurse Stephanie for getting him to smile.

After A LOT of back and forth, we were finally able to get the shipment of Theo's new food. It's very similar to Kate Farms PP 1.5, but the fiber content is different. We are hoping that the different kind of fiber will help Theo have more frequent poops. And that will help with his acid reflux. 

After school Theo had PT and OT at home. 

Tuesday, October 28th:

Today was "Top it off with style: Wear your best hat - wild, wacky, or wonderful" day at school. We thought the cheesehead was VERY appropriate! Theo had a big seizure right before the bus came, so he got really tired and fell asleep. 

[Halloween art]

While Theo was at school I went to the salon to have a Japanese head spa and to get my hair cut. It was so wonderful!

It was Sherman's rest week, which was good because Theo was still very tired and needed a nap after school.

Wednesday, October 29th:

Today was "Color me Crazy: Show your true colors - wear your favorite shade head to toe" Day. Can you guess Theo's favorite color?! 

At school Theo played with a sensory bag and he helped to make orange juice!

It was an early out day, so Theo got to spend some time at home with Nurse Stephanie. 

Josh has had a couple of LONG days at work as they wrap up a project. The gas is on the line now, so all they have left is clean up.

Thursday, October 30th:

Today was "Team up: Wear your favorite sports gear" Day and we all know that Theo is a HUGE Lakers fan!

While Theo was at school I had a meeting with his Dietitian, Jeannine. We talked about Theo's weight (he's lost about 5 lbs over the last year) and his height (he's only grown an inch). The GI Specialist wants him to be in the 50th percentile but Jeannine wants to make sure that he is still getting enough calories. Theo has been very sleepy lately and we think it's because his seizures take a lot out of him and burn a lot of calories. I have a list of things I need to talk to the GI about when we see him next month. 

Friday, October 31st:

Happy Halloween!

Theo was tired again today, but that didn't stop him from having a great Halloween!

If you can't tell, Theo is Baby Shark! I put the Baby Shark song on his iPad so he could play it all day at school!

The teachers, nurses, and aids dressed up as farm animals. Thanks Nurse Stephanie for dressing up!

[Sleepy Baby Shark]

At school they had a bounce house, played BINGO (Theo won!), and a Halloween parade. I think Theo had a great time!

While Theo was at school I ran out to Costco and found this gem:

After Theo got home he had PT with Ms. Becca and then we got ready for the trick-or-treaters! I turned on our permanent lights, opened the door, and waited for the trick-or-treaters to arrive.

We had a lot of kids, but I was getting sad when I noticed that some of them were skipping our house and going to our neighbor's house who had all their lights off (and were clearly not home). I sent Josh to do some recon work. He didn't figure it out 🤷‍♀️ There were houses passing out walking tacos and hot dogs, so next year we are getting a food truck! 🙃

Even though it started to rain, we were still able to give out most of our candy! There were so many cute trick-or-treaters, but I did not see one Star Wars character! I was shocked! Maybe next year we'll have a bunch since the new movie is coming out.

Josh put a pom pom on my beanie! I love it!

Trick-or-treating ended at 7:00 PM which was perfect because that's when the World Series game 6 started. The Dodgers won and we will have a Game 7 tomorrow night!

Josh's coffee machine died the other day. I did a bunch of research and got him this awesome ninja. It makes coffee, espresso, hot chocolate, and anything else you can think of! It even warms and froths milk!

[He's so happy!]

[Just so you know this goes great with hot chocolate!]

On Saturday night we watched the Dodgers win the World Series! It was an intense game and the Dodgers were down the entire game! Congrats to my dad and the Dodgers!

Next year the Angels are coming for the title, so watch out!

I've donated to a few food drives and for every dollar you donate they can make TEN meals! Please consider donating. People are really hurting right now!