Monday, May 18th:
It's the start of Theo's last week of third grade! He will be off of school next week and then he'll do Extended School Year (ESY) in June.
Theo and Milto went to school and had a great day! We are almost done weaning Theo off of Zonisamide (it's been a 10 week wean) and he's been only having 1-3 observable seizures a day for the last month.
After school Ms. Becca and Ms. Laura came over for PT and OT. Since the new Star Wars movie is coming out this week they thought it would be a good idea to play with Grogu (aka baby) and "lightsabers!"
Tuesday, May 19th:
Theo and Milto went to school today and at school they had Field Day! They played with some water toys and there was a bouncy house and snow cones!
We planted the rest of our flowers! I wanted to test how dahilas would do in our weather and Josh found two at Home Depot. I love dahilas, so I hope they survive!
We also go some begonias. We usually stick with petunias since we know they do really well here. But it's fun to try something new, right?!
After school we went to see Sherman at The Legacy Ranch. Theo was stubborn and would throw his head back, and his instructor Kaylin would tell him to be strong, but then Theo would push his head back even further. After a minute of being super stubborn, he would pull his head back up and the ride would continue.
Wednesday, May 20th:
While I was getting Theo ready I heard him have a seizure. I came over from the kitchen (where I was getting his meds ready), grabbed his VNS magnet, and paused. He looked kinda strange and my brain couldn't comprehend what I was seeing. Theo's seizures ALWAYS push him to the left. Eyes to the left, left arm raised, head turned to the left. Sometimes he has "hard" seizure where his entire body will go to the left in a c-shaped position. Those hard seizure are more common when he is first waking up or when he is tired.
This morning he had a c-shaped hard seizure, but it was to the right! It was like looking in a mirror.
I swiped him quickly and started the timer. Even though the seizure was hard he came out of it pretty quickly. It was strange to see him on his right side since he HATES being on his right side.
So Theo's seizures continue to change and surprise us. Lennox-Gastaut Syndrome sucks.
Ms. Jess went to school with Theo today for his last FULL day of third grade. At school they passed out awards and Theo got "Best Laugh!" He really does have a great laugh!
After school Ms. Jen came over for feeding/speech therapy. We used Theo's eye gaze and when I was showing Ms. Jen pictures of Theo's brain he kept saying "that's yucky!" We told him that his brain is beautiful and not yucky! He has gotten really good at using his eye gaze over this last year.
Thursday, May 21st:
Today was an early out day for Theo and Milto. And of course I was overwhelmed by two different situations. We are trying to hire new employees at Northern Integrity AND our bill to expand Sami's Law was scheduled to die in committee tomorrow at 5:00 PM.
First, Northern Integrity. We currently have four employees in two states (Illinois and Michigan) on three different jobs for two clients (follow all that?). We were told we needed another guy in Illinois for a long job and we also needed a guy in WY for a short term job. Great! We found great candidates and the client was happy with our picks. We hired them, but the guy we were supposed to hired for the WY job bailed on us. Ugh. So, we are scrambling to find a replacement. AND then we were told we need to find another guy for a job in PA! It's great, but very stressful!
Sami's Law update! We've had some confusion with the bill ever since it passed the House. State Senator Cappel originally signed on to be the sponsor, but then she dropped out. State Senator Lakesia Collins stepped in and became the sponsor of the bill. We are so happy to have her onboard!
This week the bill was sitting in the Senate Executive Committee (the committee I testified in front of two years ago). According to the ILGA website the bill was assigned a Rule 2-10 Committee Deadline of 5/22. That means if the bill was not voted out of the committee by 5/22 the bill would be dead and we would have to start completely over again next year and all of our hard work (phone calls, emails, getting yelled at by lobbyist, passing out flyers, talking to members of the community, etc) will go down the drain. We fought too hard for this bill for this to happen.
So, I was panicking. My friend Deepa was panicking. Representative Briel and her staff members were panicking. We could not get a hold of Senator Collins and we had tried EVERYTHING! We may have crossed a line and called in a few favors, but we were in the dark and spiraling! ðŸ˜ðŸ˜
We finally heard from Senator Collins Thursday afternoon. She said that we filed an extension and the bill would be heard next week in the Executive Committee and will be voted on by the entire Senate by the end of next week. Phew!
The bill will hopefully move out of committee soon, but we need to start telling our State Senators NOW that we need them to support the bill. Please go to the link below, click on "Illinois Senate," type in your address, and find your State Senator. Please CALL them at both their Springfield and local numbers. Ask them to please support HB4379 (Sami's Law / Adult Changing Tables).
If your State Senator is on the Senate Executive Committee (like mine is!) please please PLEASE call them! Here is a list of who is on the committee.
This bill passed the House with bipartisan support, community support, and even the support of the lobbyists groups that we negotiated with. Our Disabled community deserves accessibility and dignity!
Stay tuned for updates!
Josh is still working hard every day and he still loves his job.
After school Ms. Jess came over to watch Theo so Josh and I could go see The Mandalorian and Grogu!
The movie theatre had all these cool popcorn and drink containers, but they were crazy expensive, so we did't get any. Just a regular $14 popcorn for us please and thank you!
The movie was fantastic! It was so much fun! Even if you have never seen a Star Wars movie you will enjoy it. It's just action packed and unbelievably adorable!
Friday, May 22nd:
Since Theo didn't have school today Ms. Becca came over in the morning for PT. After therapy Theo and I watched The Late Show with Stephen Colbert for the last time! ðŸ˜ðŸ˜
I've been watching Colbert since he was on the Daily Show. I then followed him over to The Colbert Report and I was very excited when he got the Late Show gig. Even though I have been to NYC many times I never got to see his show live. We tried to go late last year after they announced that the show was canceled, but it didn't work out.
I am going to miss seeing him every day! He brought a lot of laughs and he's definitely the reason why I enjoy political satire so much. I'm sure we haven't seen the last of him though!
Late on Friday the ILGA website finally updated and we could see that an extension was filed for Sami's Law. What a relief!
Weekend:
Milto came over for a long day with Theo on Saturday. I'm so glad he was here so I could work on Northern Integrity and Sami's Law stuff. Josh was able to get in a golf game with some guys from work.
That night we went to Ruth's Chris to celebrate our 12th Wedding Anniversary!
Dinner was great and it was fun to just hang out with Josh for a few hours!
