Farmers Market Season

Monday, May 4th:

The second round of the NBA Postseason starts tonight! I'm surprised that the Lakers made it out of the first round and I hope they can capitalize on the momentum. But we are up against the defending Champions though, so I'm just hoping we don't get swept!

Happy Star Wars Day! May the Force be with you!

Since it is teacher and nurse appreciation week I decided to get four dozen Bundtinis for the amazing people at Theo's school. I dropped them off, said hi to everyone, and took Theo and Nurse Stephanie home.

That afternoon Theo had PT and OT at home.

[Theo in his stander - gotta have peek-a-boo barn AND Bluey!]

That night we had some pretty intense thunderstorms! At one point it was raining so hard that I couldn't see the house across the street!

We had a nice little pool form right in from of our rain chain and the street was flowing like a river! Luckily, we didn't have any flooding issues in our house.

Tuesday, May 5th:

Theo and Nurse Stephanie went to school while I got ready for an early Zoom meeting with a member of the Little Lobbyist group. 

[Theo - My hipster child]

Last month I sent in Theo's story to the Little Lobbyist group and I didn't hear back from them. I decided to reach out and see if they got what I had sent in. They did and they wanted to meet with me! 

Today I met with a nice lady named Mel. She told me all about the Little Lobbyist and I told her even though I was very busy with work and Changing Spaces Campaign, I really wanted to be involved if they would have me. She told me about a Family Advocacy Summit that they have coming up this summer in Chicago and that Theo and I should attend it we can. 

After we chatted, Mel reached out to s.e. the Communications Director. s.e. reached out to me and we set up a meeting for next week!

After my Zoom with Mel, I jumped on a Zoom with the founders of the Vein of Galen Malformation Foundation. They talked to a group of us about hosting a Santa Photo shoot in order to raise money for the foundation. I love the idea, but I told them I couldn't plan one this year because I have Sami's Law to focus on right now, the Little Lobbyist to focus on this summer, and we are going to be in Africa in December. But I am more than happy to support whoever is able to host the photo shoot in this area!

Speaking of Sami's Law... we got a sponsor! Senator Great news! State Senator Meg Loughran Cappel has become the Chief Senate Sponsor of HB 4379 (Adult Changing Tables / Sami's Law)! I talked to her Chief of Staff who informed me that the Senator will reach out to me next week and we can go over a plan.

Senator Cappel played a large role in getting an inclusive playground put in at the Inwood park in Joliet. They won't have powered, height adjustable, adult changing tables at the park when it opens, but maybe we can get one installed in the future.

After school we went to The Legacy Ranch to see Sherman and his friends. Ms. Kaylin was out of town last week and Theo made her pay this week! He would NOT sit up on his own (even though he can), so eventually Ms. Kaylin had to ride with him. This child can be SOOO stubborn sometimes!

Wednesday, May 6th:

Theo and Ms. Jess went to school while I worked at home.

I came across this post on Facebook and it made me so mad. This is why we can't have nice things because they get vandalized! The powered, height adjustable, adult changing table at the Coal City park was vandalized and it took TWO years to fix. And now there are kids vandalizing ADA picnic tables at the Mokena Park. Come on guys!

A few hours after this was posted one of the teens turned himself in, so the post was removed. I am glad that he is owning up to what he did.

When we found out that the Lakers would be playing in OKC I reached out to Luke to see if he wanted to go to a game with me. He could fly into the Chicago from SLC and we could road trip to OK (it's only 11 hours from here!). Tickets to the Playoff games were surprisingly cheap, so I started looking at rental cars and places for us to stay. I told him we could go to the game on Tuesday, go to Arkansas on Wednesday, and then go to Game 2 on Thursday. Oklahoma and Arkansas are my last two states to visit, so this trip would be a multipurpose one! Unfortunately, flights were just way too expensive right now, so we decided not to go. That's a bummer because these two seats were empty during both games. I think they were meant to be ours. It's okay! Next time! 😁

Thursday, May 7th:

Nurse Stephanie left on a three week vacation last night (which we knew about months ago), so Theo went to school without a nurse today. Luckily, Milto and Jess are able to take most of Nurse Stephanies hours, but there are a couple of days that he will be at school by himself. But not to worry! Nurse Brad is at school and will be there to help Theo!

Friday, May 8th:

Happy 15th Birthday Brodee! I can't believe he is already 15! We got him a cool remote control car and he and his friends had a fun night bowling!

Theo went to school by himself again today and after school we just relaxed since PT got cancelled. 

[Theo was not happy to give me the flowers he made me for Mother's Day]

On Friday night I "beat" Mario Odyssey. It was such a fun game and I look forward to completing the entire thing and getting all 999 moons!

Weekend:

On Saturday, Ms. Jess came over to watch Theo. We went to the Morris Farmers Market and it was so fun! There are a ton of booths and we got some delicious things!

After the Farmers Market we went to the The Hope Helps All Inclusive Playground in Coal City. I wanted to make sure the changing table was still broken before I started calling the city again. I was pleasantly surprised to find that the table was fixed! YAY! It only took two years, but YAY!

[Theo loves to swing]

We let Theo swing for a while, then we changed him, and headed home. 

That afternoon we went to the new park at Inwood in Joliet. It was very busy! But it was really cool! They had a lot of accessible things!

Of course Theo wanted to swing!

I checked out the bathrooms even though I knew they wouldn't be accessible. They aren't, but hopefully someday they will be!

Mother's Day was on Sunday. I have such mixed feelings about Mother's Day, so it's hard for me. But I want to wish my amazing mom a happy Mother's Day! I love and appreciate her so much!

[Mom at Hobbiton!]

That night we cut Theo's hair! I love it long, but it was getting harder to comb and I'm afraid he's going to overheat during the summer. So it was time for a cut!

So handsome!

Sami's Law Heads to the Senate

Monday, April 27th:

After Nurse Stephanie and Theo went to school on the bus I started getting ready for a Zoom meeting with Senator Collins. Back when I first started discussing Sami's Law with Representative Briel, Deepa reached out to Senator Collins to see if she would be interested in sponsoring the bill in the Senate. She was on board and thought it would be a good idea to submit a duplicate bill on the Senate side, so if the bill gets stalled in the House, it can pass in the senate in the meantime and vice-versa. Unfortunately, Senator Collins barely missed the deadline to file in the Senate, so she had to wait until the bill made it's way through the House first.

The bill passed the House and is now in the Senate. The purpose of our meeting with Senator Collins was to discuss the bill, all the battles we had with the lobbyists, and our strategy for getting it passed in the Senate.

Unfortunately, Senator Collins wasn't able to get on the Zoom, but her Chief of Staff did meet with us. She said that Senator Collins wants to take on the bill, so that is a good start!

After our meeting with Senator Collins office I finally heard back from 

Representative Briel about how negotiations went with the Superintendents. She said, "Basically, the main issue that the superintendents had with the bill was the "room" aspect. They were concerned about the cost of creating a separate "room" (family restroom) for the tables. The amendment allows for universal changing tables to be installed in an ADA compliant stall within an existing restroom. Eliminating the need for the table to be in a "room" cut down costs significantly and brought the superintendents to neutral on this bill."

That doesn't make a ton of sense since this bill is about new construction, not existing buildings. BUT I think it means that if an existing school does an add-on of over 40,000 square feet they would need to add in an adult changing table, but they wouldn't have to construct a room for it. Compromise! 

Tuesday, April 28th:

Theo and Nurse Stephanie went to school, Josh headed north for work, and I worked at home on some special projects.

That afternoon I took Theo to The Legacy Ranch for a ride with Sherman. Ms. Kaylin was out of town so Theo had a different instructor. Theo struggled a little bit, but that's okay. He's not going to be perfect every week!

[Remember when Theo used to pout?! So funny!]

Wednesday, April 29th:

Theo had an early out at school today, but Theo still worked hard during the few hours he was there!

Thursday, April 30th:

Theo and Nurse Stephanie has another productive day at school! After they got home Stephanie told me that they were asking Theo what his name was, but he wouldn't answer. They then gave him a list of names to chose from. When his teacher said "Josh" Theo started laughing so hard and didn't stop for a very long time!

A new playground has opened in Joliet. When I heard they were building "the largest fully inclusive playground" I reached out to see if they would also be installing a powered, height adjustable, adult changing table. They said they were not. I don't understand how they can call their playground "fully inclusive" without a place for everyone to go to the bathroom.

Friday, May 1st:

I can't believe it's already May! 

We moved the larger stander out of the living room since Theo hasn't been using it. And now we can access his KidWalk easier. Theo will stand for about 30 minutes if he has Wheel of Fortune and Peek-a-Boo Barn!

[Seriously, why do we live here?!]

Star Wars Day is upon us and The Mandalorian and Grogu is coming out on May 21st!

The Lakers gave us a scare, but they were able to close out their series with the Rockets!

 Now they have to face the Thunder. It's gonna be a tough series, but Austin Reeves is back and Luka may be ready by Game 5! Fingers crossed he comes back sooner!

Check out the amazing map that my friend, Kim, made and manages. More and more tables are added all the time!

AND we have great news! Remember back in 2024 when we were trying to get Buc-ee's to install adult changing stations in their new buildings? They said no. And then we had a letter writing campaign and they still said no. AND THEN a bunch of people including my parents showed up a town planning meeting and they asked them in person to install an adult changing station. And they still said no! 

We thought that was the end of the conversation. A few weeks before the new location was scheduled to open, my friend Jennifer (who is the co-chair of the Ohio Changing Spaces Campaign) reached out to Buc-ee's to see if the new building had an adult changing station. They would not confirm or deny. Strange.

On Monday, April 6, 2026 Buc-ee's opened their first store in Ohio. Kim and Jennifer and their sons attending the opening and were so happy to see that Buc-ee's DID include a family restroom with a powered, height adjustable, adult sized changing table! 🙌🏻 🙌🏻

Thank you to Kim and Jennifer and everyone else (including my parents) who fought so hard for this! This is going to help so many families as they are traveling through and to Huber Heights, Ohio!

Theo's Special Brain

Monday, April 20th:

Theo and Nurse Stephanie went to school, Josh headed off to work, and I ran some errands.

[Strength training!]

Do you need a reminder that Star Wars Day (May 4th) or the new Star Wars movie, The Mandalorian and Grogu, are happening NEXT month?!

After school Theo had PT and OT with Ms. Becca and Ms. Laura. He did a great job!

Tuesday, April 21st:

I picked Nurse Stephanie and Theo up early from school because we had to jump on a Zoom with Dr. Shaibani from Lurie Children's IR. He was the one who ordered the MRI after we met with him back on May 21, 2024.

At 1:00 PM he appeared on the screen and he asked how Theo was doing. He then shared his screen with me so we could see both Theo's MRI from April 26, 2026 and February 6, 2023. 

Let me start by saying this, Theo's brain is very special and complicated. The first set of pictures are a transverse view, so from the top down.

Neurotypical brain of a 6 year old boy:

Theo - February 6, 2023:

Theo - April 26, 2026:

The first things you notice are the enormous size of Theo's ventricles. Yes, they are massive and they have been like that for a long time. BUT you can see how they have shrunk since the MRI three years ago. That is a good thing. You can also see the fluid pocket on the left side of Theo's brain from 2023. That pocket is now pretty much gone and grey matter is pushing into that area. 

Theo's Vein of Galen (VOGM) is that large black mass towards the bottom of the picture on the right side. It's about the size of a walnut and it is terrifying. Dr. Shibani said that the VOGM is stable, and that is a good thing.

The scan also showed that new grey matter is pushing into areas that had damage before (mostly around the outer edges of the brain). That is also good news!

The next images are sagittal view (side view) of the brain. 

Neurotypical brain of a 6 year old boy:

Theo - April 26, 2026:

The large black mass that is sitting right on top of the cerebellum is the VOGM and the large white area is one of Theo's ventricles. Can you see why the VOGM is so terrifying?! When Theo was a baby he developed hydrocephalus. This caused his ventricles to grow quickly and push his brain into his skull which cased brain damage. A lot of his brain is made up of Cerebral Spinal Fluid (CSF) which is located in the ventricles and a large platinum ball that is within the VOGM.

This last view is looking at the back of Theo's head. Again, the VOGM is the large black mass, the ventricles are the large white areas, and the VOGM is sitting on top of the cerebellum.

Theo - April 26, 2026:

Overall, Dr. Shaibani was very happy with how Theo's brain looks and with how Theo is doing physically and developmentally! The said that he wants to follow up with another MRI in five years. I told him that waiting five years makes me nervous because they found a fistula back in 2019 during an angiogram and they wouldn't have known it was there if they hadn't looked. He said that he trusts my mom gut and we can do the next MRI in three years. He also added that if we notice anything strange going on with Theo or if he starts regressing that we need to call him immediately. I left the meeting feeling really hopeful about my sweet Theo and his progress.

After our meeting with Dr. Shaibani we headed to The Legacy Ranch to see Sherman and his friends. Theo did great!

Wednesday, April 22nd:

Theo and Ms. Jess went to school and had a great day! After school Ms. Jen came over for feeding/speech therapy. Theo has a few new teeth coming in and he was very protective of his mouth. So, we focused on his eye gaze and showed Ms. Jen all the cool words and games!

[Why do we live here?!]

Thursday, April 23rd:

After I sent Theo and Nurse Stephanie off to school on the bus I got ready and headed to the school. Every year we have an IEP meeting for Theo and every three years we have a reevaluation meeting. The meeting was attended by Theo's teacher, all of his school therapists, the school nurse, the district nurse, the school principal, and a representative from the Superintendents office.

The meetings both went well and everyone agrees that Theo has been A LOT more chatty lately and that he needs to wear his glasses more!

After the meeting I went to get my allergy shots and to run a few more errands. 

That evening Josh attended an event at Top Golf. He said it was for "networking purposes" 😁

Friday, April 24th:

There is construction going on across the street from Theo's school. And ComEd decided that they would cut power to the area on Friday with only a few days notice. So, on Friday Theo had an e-learning day. 

His teacher, Ms. Kate, sent a list of things for us to work on. One focused on chores:

[Going on a walk and getting the mail]

[Theo unloading the dryer]

Theo also colored a nice note for the amazing crew at his school.

The Lakers beat Houston again! It was a nail biter, but we are up 3-0!

[Again, wild]

Heritage Auctions is doing a huge auction for Star Wars day. Check it out here and let me know if you want to go in on this awesome Mandalorian helmet! 

Weekend:

I tried to get a picture of Theo's teeth, but he doesn't like it when I take out my phone 🤦‍♀️

On Saturday, we went for a walk to the park with Ms. Jess and Theo was very happy in his swing.

On Sunday, Josh went golfing at a local course with some guys from work. He said he did well and had a great time!

Isn't this a cute idea for a Disney Trip countdown?! Only 417 days to go!