Olympics and Sami Law Update

Monday, February 16th:

Theo didn't have school today, so Stephanie came over and spent the day at home with him. 

I kept checking the ILGA website to see the progress of Sami's Law 2.0. All of a sudden it showed that there was going to be a hearing on Wednesday at 8:00 AM and we needed witness slips. I posted on Facebook and IG, sent emails and text messages, and reached out to everyone I know! In just a matter of hours we had over 200 witness slips!

That afternoon Theo had PT and OT with Ms. Becca and Ms. Laura.

Tuesday, February 17th:

Theo headed off to school where he had a great day! Theo got to choose a book to read and after they read it he used his eye gaze to he say he liked it! He also got iPad time and wore his glasses for that. He also went in the stander for 30 minutes. 

After school we took Theo to The Legacy Ranch for his lessons with Sherman and Ms. Kaylin. They decided that since Theo did so well riding with Ms. Kaylin last week without his neck brace, they would have Theo ride by himself without the pillows or his neck brace. They put a harness around his chest and two of the volunteers helped hold him steady. But Theo held up his head all by himself for the full 30 minute ride. He only stacked a couple of times and he was tired by the end, BUT he did so great!

So proud of my super strong boy!

Wednesday, February 18th:

Theo and Ms. Jess headed off to school and I jumped online to see if I could learn anything about the hearing in Springfield. We did manage to get 261 proponent witness slips and multiple people sent in written statements! There were also seven opponents. Most of those are lobbyist that represent small businesses. It's frustrating because the bill clearly states the size of the buildings that this would impact and it is not going to impact small businesses. But they need to oppose on principal. 

Hours after the hearing I still didn't know how it went, BUT later that day I saw that the bill got a co-sponsor! So, the bill is not dead!

Speaking of the government... please make sure you vote in local elections. They impact you so much more than federal elections.

We finally got the results of Theo's EKG and he was cleared to start a new medication, rufinamide. We started his first dose that night and over the next month we will follow the doctors schedule and slowly increase his dose every week.

Thursday, February 19th:

Josh got himself a little drone so he could take pictures of a yard where some pipe was. He tested it out first in the basement and it worked pretty well. 

After Theo and Stephanie went to school, Josh and I headed to the pipe yard to take pictures. It didn't take long before the light wind swept the drone into a corn field. Luckily, the corn was already down, so after a short walk we found it!

Nurse Stephanie said that Theo did pretty good at school, but he was a little extra tired so he took a long nap. We knew that tiredness was a common side effect with a new seizure medication, so this was expected.

Friday, February 20th:

Theo and Stephanie went off to school and Josh went golfing with some guys from work. Theo had another great day at school, but he was a little tired.

Our garage door motor decided to break. Ugh! But luckily Josh is super handy and he was able to fix it very quickly!

Weekend:

Ms. Jess came over to watch Theo on Saturday. Josh and I went up to Galena to get lunch at Ella's Italian Pub, coffee and matcha at Storybook Cafe, and cookies at Crumbl! It was nice to get out and go on a nice day date with Josh 😍

During the rest of the weekend we watched the Olympics (like we've done every day for the last two weeks) and got ready for a busy upcoming week.

The Olympics were a lot of fun and both the men and the women's hockey teams won GOLD! I love cheering on our athlete's! 

[Lost two teeth and scored one goal!]

[Closing Ceremony]

Can't wait for the Summer Olympics in LA in 2028!

Valentines Day 2026

Monday, February 9th:

Theo and Nurse Stephanie went to school and had a great day! Josh has been working from home, going to meetings, and practicing his golf swing. He signed up for golf lessons and he is really enjoying it so far. I spend most of my day working out, working for my company, and planning our next vacation (more on that later).

After school Theo had OT with Ms. Laura. It was nice to have some one-on-one time with her!

Tuesday, February 10th:

Theo and Nurse Stephanie went to school where they learned about the Northern Great Plains and Theo had physical and occupational therapy.

After school we went to The Legacy Ranch so Theo could have his lesson with Sherman and Ms. Kaylin. Theo did his entire lesson without his neck support! He's come a long way in the last few months!

Wednesday, February 11th:

Theo had a half day at school and Ms. Jess said he did really well! 

While they were at school a guy from a generator company came by. We are applying for a grant for home modifications. One of the things we may be able to get is a home generator since Theo is medically dependent on technology. Another company is coming out on Friday to give us a quote. Hopefully we will be able to get the grant!

After school Ms. Jen came over for feeding/speech therapy. Theo got pretty upset when I asked him if he wanted a snack, so we skipped it today. I showed Jen how much better Theo is doing with his toothbrushing. So we are still moving in the right direction!

Thursday, February 12th:

Theo and Nurse Stephanie went to school and I went to the salon to get a Japanese Head Spa and my hair cut. It was delightful!

I got a message from the place where we got Theo's new glasses letting us know that his glasses were ready to be picked up. We picked up Theo and Nurse Stephanie from school and headed to the clinic. Theo was NOT happy about his new glasses, but they actually fit really well and I'm sure he'll get used to them.

Friday, February 13th:

At school Theo worked on getting all his Valentines Day cards ready to be passed out to his friends.

After school Ms. Becca came over for PT and Theo did really well holding his head up and being super strong!

Weekend:

For Valentines Day Josh and I went to sushi for a lunch date. Josh got me chocolates and I got him a video game. We are pretty boring! ❤️

[Theo's Valentine for Sherman!]

Have you ever heard of Morgan's Wonderland? It's an amazing theme park that a father built for his special needs daughter. All of the rides are accessible! It sounds amazing, but it's in San Antonio, Texas which is pretty far away. BUT it was announced that a similar park called Michael's Wonder World is going to be built in Olathe, Kansas which is much closer to us! How cool is that?! Maybe we can go one day!

Winter Olympics & Super Bowl 2026

Monday, February 2nd:

Happy Groundhog Day!

Josh, Theo, and I made the long drive down to Peoria today, so we could check in with Amanda Allen (APN) with the ENT in Peoria. She checked Theo’s ears and his right ear still has a tube in it. She said as long as there isn’t an infection and it’s not bothering him they will leave it for now. We will see her again in six months!

That afternoon Ms. Laura and Ms. Becca came over for PT and OT. 

Tuesday, February 3rd:

Theo and Nurse Stephanie went to school, Josh went to his first golf lesson, and I attended a Zoom meeting with my fellow Changing Spaces Leads.

After school we took Theo to The Legacy Ranch to see Sherman. Theo rode without his neck brace today and did pretty well, but you could tell he got tired very quickly. It's definitely something to work on!

Wednesday, February 4th:

Theo and Stephanie headed off to school and Josh went to the NICOR office for some meetings. A few hours later I went to Theo's school so I could meeting with his teachers and aids for his IEP meeting. We had a great discussion about Theo and everyone seems very happy with his progress.

After the meeting I went to Theo's class to see his friends, all the aids, and his teacher. I love their little class room!

[How crazy is this?!]

It's Valentines Day next week, so I got these cute cards for Theo to pass out to his friends!

Thursday, February 5th:

I love how I look when I have fake lashes, but they are such a pain to maintain and they are expensive. I talked to my esthetician and she suggested I look into a lash lift and tint. I said let's give it a shot!

[Before]

Essentially, she put a solution on my lashes to curl them and then she dyes them. Kinda wild! The solution smells like the stuff they use for perms and I was having major flashbacks to my childhood!

My lashes are pretty short, but she was able to get some nice lift! I'm excited to see how they look in a couple of days!

Theo's new glasses came today and they are too tight on his head! UGH! Luckily, there is an eye center place right across the street from Theo's school, so we will take him there tomorrow to see if we can find a pair of glasses that will work for him!

Friday, February 6th:

Happy Winter Olympics Opening Ceremony Day!

At school Theo participated in the passing of the torch and also the bobsleds! 

[Theo's friend passing him the torch]

[Theo has the torch!]

[USA USA!]

[Bobsleds!]

[Theo won!]

We picked up Theo and Nurse Stephanie from school (twice in one week!) and headed across the street to the eye center. A super nice lady helped Theo try on some glasses and I think we found a pair that is going to work for him!

That night we watched the Opening Ceremonies of the Winter Olympics! I love the Olympics!

Weekend:

On Saturday Josh and I went to lunch and ran some errands while Theo hung out with Milto. The rest of the day we watched the Olympics. On Sunday we watched some more Olympics and then the Super Bowl. I don't care for either team. I just want to see funny commercials, some movie trailers, and a half time show I can dance to!

"The only thing more powerful than hate is love"

EEG Results and an EKG

Monday, January 26th:

We had a very busy day! Theo and Nurse Stephanie had a great day at school. They learned about the Winter Olympics (Theo asked where and when they would be), he threw a ball back and forth with a friend, chose music, and played on his iPad. 

After they got home Theo had PT and OT with Ms. Becca and Ms. Laura. We then had a meeting with Theo's Epilepsy Specialist, Dr. Garcia Pierce. We went through Theo's overnight EEG and the results. She showed us videos of his seizures and what they look like on the EEG chart. I thought the new seizures that Theo was having were myoclonic seizure, but they are still tonic seizures. BUT he is having myoclonic seizures too. Dr. Garcia Pierce pulled up a video of the myoclonic seizure so we could see what it looks like. Myoclonic seizures are quick muscle jerks and tonic seizures cause the muscles to stiffen. It's hard to tell them apart sometimes. AND Theo is having seizures that start as myoclonic and then becomes a tonic seizure. 

[Seizure that starts as a myoclonic jerk then changes into a tonic seizure]

Theo is having a few different types of seizures:

Tonic

Myoclonic

Dialeptic

Myoclonic into Tonic

During the 24 hour EEG Theo had 26 seizures. Three years ago when Theo had an overnight EEG he had 50 seizures and they were all tonic. Since then he has gone through a few medication changes and he now has a VNS. It's hard to figure out a good plan of action when Theo's seizures can change. Unfortunately, that is the nature of Lennox Gastaut. And it really sucks.

Dr. Garcia Pierce told us about another medication that she thinks will help Theo. She said it can affect his heart though, so we need to get an EKG to make sure Theo doesn't have any issues with his heart. Luckily, Theo has never had heart issues which is extremely rare for a kiddo with VOGM. Heart failure is actually what kills most kids with VOGM. She is sending us to get an EKG and if it all looks good Theo will start on his new medication. If he handles the new medication well then we will start weaning him off of the Zonisade. 

Josh and I were supposed to go to the Lakers vs. Bulls game in Chicago that night, but tickets were just too expensive. So, we went to dinner at Indienne. 

[I love the city at night]

We had the preset non vegetarian dinner and it was fantastic!

[Pani Puri and Mushroom Galouti]

[Scallop Cafreal with Golden Kaluga Caviar]

[Lamb Kebab with Chili Cheese Kulcha]

The final dinner dish was Chicken Makhni, which was amazing! That was definitely the best butter chicken I have ever had! In the end we spent a little more than I would have liked, BUT it was all delicious and way better than any food we would have eaten at the United Center!

Tuesday, January 27th:

Nurse Stephanie came over and then we all went on a road trip to Ottawa where we saw Dr. Robertson with Peds General Surgery. He checked Theo’s g-tube site and was happy with how it looked and the size of the g-tube. He agrees that it’s likely Theo’s new formula that is helping with his acid reflux and that is helping to keep the granulated tissue down. Dr. Robertson told us that he was heading to Africa soon to work on the Mercy ship. How exciting! I can't wait to hear all about it when we see him next year. 

That afternoon we took Theo to see Sherman at The Legacy Ranch. Theo did great and we talked about Theo riding without his Hensinger next time, so he can work on holding up his head on his own.

Wednesday, January 28th:

Theo went to school with Ms. Jess and they had a nice, short day. At school they made hot cocoa dip and Theo played with his coconut cool whip.

After school we took Theo to the clinic to get his EKG. Hopefully it all looks good and he can start his new medication soon.

Thursday, January 29th:

Theo and Nurse Stephanie had another great day at school. Theo had a long PT session with Ms. Vicki where they worked on sitting up, rolling, tummy time, and rolling the ball. He also got time to play with his pom pom and on the iPad.

Josh is currently unemployed, but he is still working on some paperwork for various projects from last year. The Rubicon is leaking again, so he has plenty of time to investigate and figure out what's going on.

Friday, January 30th:

Theo went to school with nurse Stephanie and they had another great day! When Theo's teacher asked him what to wear in the winter he said "coat" with his eye gaze. They also read "Going to Town, My First Little House" and when they asked Theo what he thought he said it was "boring." Oh, this kid! He is too honest... like his mom 🤦‍♀️

Other:

Our friends in Virginia need our help!

Here is a message from them. I promise it will take 5 minutes to send an email and it will help so much!

We need your support and we need it now!

We are working to make adult-size (universal) changing tables to be a requirement in new buildings across the state of Virginia. This new building code that will be required in large buildings of certain building categories is going to improve many lives dramatically. We need your voices in support of this!

Please email your words in support to: codedevelopment@dhcd.virginia.gov

Subject line: PUBLIC COMMENT for B11.10.4 (also include this in the body of the email or in the attached letter)

See sample email letter bellow.

If you would like to read our proposal to improve the Virginia State building code, you can view it on our website:

https://www.changingspacescampaign.com/virginiaanddc

SAMPLE EMAIL:

To the Virginia Board of housing and community development:

I am writing in support of proposal B11.10.4. which will make Adult Changing Stations a requirement in new buildings of certain types in Virginia. By approving this proposal, you will dramatically improve the quality of life for many people with disabilities, by giving them access to a safe, private, and dignified place to address their restroom needs while away from home. Currently, countless children and adults that have a disability or medical condition have nowhere to change undergarments or clothing, while away from home, because they have outgrown baby changing tables. This leads to many of these individuals becoming isolated at home, or being changed in unsanitary, unsafe, and undignified places, like the floor of a public bathroom, or on a picnic blanket on the grass, or in their vehicle. Adult Changing stations within family restrooms are essential for us to include all people in community life, regardless of medical condition or disability.

This is important to me personally because… (Add your why’s)

Sincerely,

Sign your name

Thank you everyone for your support!

Speaking of powered, height adjustable, adult changing tables, our bill has officially been submitted!

Click here to see the progress of HB4379. This bill will update Sami's Law, which we fought to pass in 2024. We are still waiting for the Rules Committee to assign the bills to a committee. The earliest that it could be assigned would be the week of February 17th, but we don't have any guarantee of when it will be assigned. Once it is, we will need to get as many witness slips as we can!

When the time comes for witness slips I am going to make a post that people can share on Facebook, via text, and via email. I will need everyone to send in a witness slip AND spread the word! Don't worry, sending in a witness slip is easy and we will have instructions on how exactly to do that!

Theo's cousins, Porter and Kenna, sent him some funny videos of them playing. We showed Theo and he LOVED them! They are such sweet kids to think of him!

[Got some more SWAG and hired another employee!]

And Catherine O'Hara died. How freakin sad! She was too young! I saw a post saying we need to petition to rename O'Hare airport to O'Hara airport in memory of her running through it in Home Alone!