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!

Sami's Law Update - Battle in the House

The battle for accessibility continues!

On April 1st, the day before I left on vacation, I received an email from a lobbyist who represents Superintendents, Principals, and School Districts. We had talked a few times on the phone before about the bill. She had threatened to kill the bill if we didn't exclude schools, but I felt like we still had room to negotiate. Here's her email:

"We are scheduled to meet with the Representative next week. Just curious about this last amendment? Any reason schools had not been excluded? We discussed keeping lines of communication open and honest. This concerns me."

I had no idea what she was talking about. There was a meeting set up? News to me. I was frustrated that she implied that I wasn't being open and honest with her. I wasn't hiding anything. She copied a bunch of other lobbyist in the email, so I decided to respond to all of them. Here's what I said:

"Hi XXXX! You and I spoke on March 22nd and March 23rd about this bill. We discussed options and compromises and the need to be heard by Representative Briel. After we spoke I called Representative Briel. I talked to her about your concerns and how we need to set up a meeting. I then emailed you back and let you know that she wants to set up a meeting. I have not spoken to her since then and I was not aware of the meeting scheduled for next week. But I remember that is what you wanted, so that you could voice your concerns. 

When you and I spoke on the phone I asked you how many schools were going to be built in the next 10 years. I then asked how much it costs to construct a new school. We also discussed other options for changing students with diapers like using nursing stations. I asked you if you knew what nursing stations were required to have. We ended that call with some lingering questions and I felt like some things still needed to be addressed. So I went to our local schools and talked to school nurses, teachers, principals, and even a superintendent! We talked about the needs of the special needs students and how schools are supposed to provide toileting needs for them when they are students there. We talked about the costs and like you said "the burden on tax payers." We discussed options and tried to brainstorm other ways we could give some dignity to this community. Here are some things we discussed:

Cost - How much is a new school? That really depends on the size, type, and location. There are High Schools in Texas that have spent up to 100 million dollars on just their football stadiums! That puts the total bill around 250-500 million dollars! But we aren't in Texas, we are in the great state of Illinois! From what I can find a new High School can cost $320 to $385 per square foot to build in Illinois. This would put a costs for a larger hight school around 100 million dollars. If this bill passes and if the school is over 40,000 square feet and is built after January 2029 it would need to include an adult changing station. I've gone to a few websites that area run by people who are against this bill and they state that these adult changing stations would costs $10,000, so we'll use that number. $10,000 to give a High School child their dignity while they get an education at a 100 million dollar High School. 

Side note: I have friend who uses powered, height adjustable, adult-sized changing tables to change himself. He is able to self transfer onto the table from his wheelchair and change himself without any additional help. He talks about how amazing it would have been to have an adult changing station in his High School, so that he could take care of his toileting needs himself. He can! He just needs the tools! That is dignity. That is what the disabled community deserves. 

Nursing Stations - Say there is a mother with two sons. One is a High School Varsity Basketball star (B) and the other is a middle schooler who is in a special needs program, uses diapers, and is in a wheelchair (T). The mom takes T to go watch his brother play in a basketball tournament. They go to a school and are cheering on B when T has a situation and needs a diaper change. If there is an adult changing station in the school the mother can take her son there and get him changed. If there isn't then she needs to find someone who has keys to the nursing station. Even if she is able to find an administrator (Are they in the admin office? Are they watching the game?) and get her son into the nursing station there are other problems. Maybe there isn't a cot because the nursing station is too small for one. What is there is a cot but it is too high and the mother can not lift her child onto it without help (this is where powered, height adjustable tables come in handy)? And now she is left with two awful options: change her child on the floor and risk not being able to lift him to get him back in his wheelchair or let him sit in his soiled diaper. I've read through the literature and Nurses stations are not required (the word "should" comes up a lot) to have beds or cots, sinks, or places to dispose of soiled diapers.

I know what people will say - just stay home. If I want to take my child to watch his cousin participate in a wrestling tournament at the local High School, but there isn't an adult changing station there - just stay home. If I want to take my child to the park or a museum or on vacation... don't - just stay home. 

This bill is not trying to hurt people. It's trying to help them. $10,000 changing station in a 100 million dollar school - That is not a tax burden. You'd be surprised how many people think that the special needs community deserves dignity. There is a significant aging population and they don't want to just stay home. Having adult changing stations in public places are beneficial to special needs children, disabled vets, aging adults, babies, people who are temporarily disabled (did you know its easier to put in or take out a catheter if you are laying down? I didn't know that until someone told me recently!), and their caregivers.

I am a mother to a child with severe disabilities. I am his caregiver. I am so tired of changing his diaper on the floor of public bathrooms. And soon I won't be able to. My son is getting bigger and I won't be able to safely lift him off of the floor without help. Our world is getting smaller and we are becoming more isolated. It's not healthy and it's not okay.

We are on different sides of this issue, but that doesn't mean we can't talk. And it sounds like a meeting is set up! I appreciate you letting me know about it. I'm going to reach out to Representative Briel now and see if I can attend the meeting via Zoom since I will be out of town next week.

Talk to you all then!"

After I sent my email I reached out to my Representative Briel. She didn't know about the meeting either, but she said she would reach out to the lobbyist to see what was going on. I also told her that I was going on vacation but would be available by phone, email, text, etc. If the meeting was going to happen I wanted to be a part of it. 

Well, apparently the meeting between the Representative and the Superintendents happened and another amendment was made. To this day (April 26th) I still do not know what was discussed. But the good news was that the bill was moving forward and was scheduled to be voted on by the House on April 17th. 

In other good news, on April 7th the bill got a co-sponsor and she is a Republican (the Republican Caucus previously came out against the bill). I am so excited that we have a bipartisan bill!

On April 17th, Representative Briel gave a short speech on the floor of the House and then voting began.

The bill passed the House! 

72 Yeas (5 R/67 D)

18 Nays (17 R/1 D)

4 Present (4 R)

14 Excused Absence (5 R/9 D)

10 Not Voting (8 R/2 D)

Five Republicans broke with their caucus and voted Yea because their constituents asked them to. Calling your Representative matters and it makes a difference!

After the bill was passed in the House, Representative Briel put out the following statement:

I appreciate her and her staff so much for fighting for us! I know going up against an opposing caucus and a group of lobbyist is not easy, but she held to her beliefs and I love her for that!

My friend, Deepa, and I are meeting with Senator Lakesia Collins tomorrow to discuss the bill. Hopefully any opposition to the bill presented itself while the bill was in the House and all those issues were ironed out (the bill was amended four times!), but we'll see. This is politics after all and we are up against some powerful groups who view us as the bad guys for trying to make the world a little more accessible.

Please go to this website and click on "Illinois Senate" to find your Senator. Please CALL them and ask them to support HB 4379 (Changing Tables/Sami's Law).

If you'd like to read the bill, see updates, or view the witness slips, click here

Thanks for fighting with us!

MRI and Disney Hotels

Monday, April 13:

I flew home Monday night after a super fun trip to Vegas and Utah. It's always nice to be home, but there was a lot to catch up on!

My first issue to solve had to do with my own health insurance. I received a call from my allergist's office letting me know that (according to what they can find) my insurance hasn't been active since October 2025. I'm usually dealing with Theo's insurance drama and now I have my own. I sent Michelle ("My Personal Champion") at Cigna to let her know. She said she would look at it from her end. I also asked Josh to reach out to HR at d'Escoto to see if it was a problem on their end. I'm not lying when I say I am always on my phone! I spend so much time every week on hold with insurance companies, doctors offices, hospitals, etc. It's exhausting!

Look at this adorable post card that Theo got from my parents! 

[School art]

Tuesday, April 14th:

This morning a team from Generac showed up to install our new Generac Generator! We applied for a grant through DSCC to get it. Since Theo is on a medical waiver for Medicaid because he is dependent on technology, we were approved for the grant! It will turn on automatically if we use power and it doesn't require any maintenance on our end. It's nice to know that Theo's overnight feed pump, nebulizer, oscillating vest, cough assist, and suction machine will all continue to work if we lose power. AND Theo has medication and food that has to be refrigerated, so it's nice to not worry about those getting spoiled. 

After school we took Theo to The Legacy Ranch to see Sherman and his friends! Theo did great holding up his head and being super strong!

Wednesday, April 15th:

Happy Tax Day!

Happy 45th Anniversary to my Parents! 

Theo went to school today with Ms. Jess for a half day. This gave me enough time to workout and catch up on a few more work things, but then I got news that we were hiring a new employee at Northern Integrity! That creates more paperwork for me, BUT it's very exciting!

Thursday, April 16th:

Josh, Theo, and I got up early and headed into the city for Theo's sedated MRI at Lurie Children's Hospital. The MRI team was running a little behind and Theo got taken for his MRI about 2 hours behind schedule. Usually the MRI will take about an hour, but this one was closer to two hours! Theo hasn't had an MRI since February 6, 2023 when they were doing prep for his VNS surgery, so I understand they wanted to get in there and get some really good, updated photos.

Once Theo was done, in recovery, and awake, we were able to see him. He was a bit tired, but overall in a pretty good mood. We fed him and he held that all down, so we were discharged.

After I got home I checked the WDW website to see if our hotel dates for our family trip in June 2027 had been released yet. 

While I was in Utah I talked to Alysse (Andie's sister and our Disney travel agent) about when she thought the dates would be released. She didn't know, but she thought we had a few more months to go. 

To my surprise the dates had actually been released earlier that day! I got on the phone with Alysse and we were able to book most of the rooms I wanted!

We are going to be staying at Beach Club for three nights in a Two bedroom Suite - Club Access Level. I really wanted the Newport Suite, but that was sold out, but that's okay!

Beach Club has amazing pool, so I am excited to spend so much time there!

We are also going to spend three nights at the Grand Floridian in the Disney Suite - Club Level! I wanted this room so badly and we got it! 

We will then spend four nights at the Polynesian! I really wanted to spend two nights in the Bungalow and two nights in the Tower, but the Bungalows are sold out. We did manage to get one night in the Ambassador VP Suite - Club Level and three nights in the Tower in a Two bedroom villa with a theme park view! 

Thanks to Alysse for helping me book everything! I know it was a scramble, but she is a pro! Let me know if you need a travel agent for your Disneyland or Disney World trip! She's the BEST!

Friday, April 17th:

Theo went to school with Nurse Stephanie and they had a great day! After school Theo had PT with Ms. Becca and he worked really hard for her.

After Theo went to bed Josh and I watched the news because there was a line of storms coming in that had already dropped some tornados. 

I love spending my nights watching the news!

In the end, the storm was pretty intense, but we didn't have any damage around our neighborhood. Others were not as lucky!

Weekend:

Josh and I went to see the new Mario movie! It was really cute and a lot of fun!

The Lakers are hurting (Luka and Austin are both out for the foreseeable future), but they made it into the Playoffs! I am just hoping we don't get swept by the Rockets. But we won our first game, so we are off to a great start!

[Wild!]

On Sunday, Josh went golfing with some guys from work. He was nervous and excited for his first official golf outing! Besides the hail, it said it was a lot of fun!

Three Part Trip - Part Three: Northern Utah

On Thursday, April 9th we check out of our townhouse in Desert Color. It was a great stay! Our townhouse was great! The townhouse we stayed at was called "Laguna Beach" and it had four bedrooms, 4.5 bathrooms, a huge kitchen and living room area, a hot tub on the balcony, and kayaks for us to use at the lagoon. We were walking distance to both the lagoon and the other pool in the resort. My only complaints are that the walls are very thin (I could hear the guests in the other townhome) and there is no cell service in the community (my phone was literally in SOS the entire time we were there). The townhouse does have good Wifi which was nice since I had some work to do on my computer while I was there. 

Thanks mom and dad for booking the townhouse and for a great spring break!

After we checked out of the townhouse, mom and dad drove back to Vegas to catch their flight back home to Cincinnati. I drove north with Luke, Andie, Porter, and Kenna (thanks for letting me hitch a ride!). Before we left town we went to In-n-Out for lunch! Can you believe that I had been in the West for a week and had not eaten In-n-Out yet?! 

[Hamburger, no onions, add pickles; fry well; and a chocolate shake please!]

We then made the long drive from St George to Spanish Fork. I was so amazed at how much St George had grown since I'd been there last, but the rest of Utah is growing too. Cedar City (my old stomping grounds) is massive and there is a lot of new construction going up along the freeway.

That evening we met up with Andie's sister, Alysse, and her family at the park. It was such a beautiful night! We chatted, played games, and it was so fun to catch up!

The next day (Friday, April 10th) we met up with Chasten and Alysse and their kids on the BYU campus. Our first stop was the Cannon Center for some cafeteria food! The food was actually really good AND they had unlimited BYU Creamery chocolate milk!

After lunch Chasten took us on a tour of campus in his fancy golf cart!

My freshman year I lived in Heritage Halls, which were right behind the BYU Creamery. Years ago they knocked down the old Heritage buildings and built new ones and FINALLY they knocked down the old Creamery and built a new one. It's huge and actually has a lot of indoor and outdoor seating! 

Chasten brought me a bunch of BYU SWAG! He even got shirts, stickers, and hats for Theo and Josh. That was so sweet!

The tour was so much fun! We got to see a bunch of the buildings where I had classes and there was a lot of new construction too. I love the BYU campus. It's so pretty! 

Thanks again to Chasten for giving us a fancy tour and for the SWAG!

We hung out for the rest of the day and that night we went to a birthday party at Andie's sister's (Ashlyn) house. We stay up way too late playing card and dice games, but it was a lot of fun!

On Saturday (April 11th) I went and had lunch with my BFF and BYU Freshman roommate, Lacey. It was so fun to see her! 

That night we went to CHOM for dinner 😋

On Sunday (April 12th) I went and got some In-n-Out before meeting up with Luke, Andie, Porter, and Kenna.

When I got to their condo Luke was at Urgent Care. The swelling around his ankle was getting worse and the bruising was spreading. While we waited for an update from Luke, Andie and I watched YouTube videos of all the cool rooms you can book at the Walt Disney World Resorts. 

Luke finally called and gave us the news. His ankle was broken. Luckily, it doesn't look like he will need surgery, but he will have to wear a boot for 4-6 weeks. Bummer! Sorry brother!

That afternoon we went to Andie's brother's (Rick) house and had dinner with the entire Smith family. I always love coming to Utah and spending my Sunday nights with the Smith family!

Monday morning I checked out of my Airbnb and Luke took me to the airport. I always miss my family and friends when I leave Utah. But I also miss these mountains! Did you know that Illinois is the second flattest state?! Just behind Florida! 😭 😭

Thanks so much to Luke and Andie for hanging out with me! I'll see you guys in 430 days!