We had a very spring-like week here in the Chicago suburbs! Tons of rain, lots of sunshine, and some severe thunderstorms. The flowers that Josh planted over the weekend got a lot of water and are thriving!
Monday, May 6th:
Looks like all our hard work paid off and SB 2908 aka Sami's Law has been called forward into committee! I have been asked to testify at a Senate Executive Committee hearing at the Illinois State Capitol on Wednesday about the need for adult/universal changing tables in public places. Renee, Senator Rezin's assistant and Sami's mom, will be testifying too! While Theo was at school I worked on my testimony and did a ton of research. I reached out to a lot of the large venues in Chicago to see if they had adult/universal changing tables. This is what I learned:
Windtrust Arena - No
Wrigley Field (Cubs) - No
Broadway in Chicago - No
Soldier Field (Bears) - Never replied
United Center (Bulls) - Never replied
Lincoln Park Zoo - Yes
Art Institute - Yes
Guaranteed Rate Field (White Sox) - Yes, at first aid
Field Museum - Yes
Shed Aquarium - Yes
I was happy to see that adult/universal changing tables are available at some of the venues even though they are not currently required by law.
I also reached out to U.S. Access Board. According to their website, "The Access Board is an independent federal agency that promotes equality for people with disabilities through leadership in accessible design and the development of accessibility guidelines and standards." I sent an email asking if they were working on getting the ADA updated to include adult/universal changing tables. I heard back from a an Accessibility Specialist who offered to call me tomorrow so we can chat.
I also went through all the information on the Universal Changing Places and Changing Places Campaign websites.
Theo had a great day at school. He wrestled with his friend and his OT said that he cooperated and even gave her a few smiles!
Theo had three observable seizures today.
Tuesday, May 7th:
I took Theo to school this morning because I was attending his IEP meeting. Right as we were pulling into the parking lot a line of thunderstorms rolled in. It was very windy and the rain was coming down in buckets! I parked, climbed over the seats, got Theo's wheelchair unbuckled, opened the door, and RAN! We were only 150 feet from the door where Ms. Jess was waiting for us, but we got SOAKED! The kind ladies at the front desk brought both of us towels. Ms. Jess took Theo to the classroom and got him all dried off while I went to Theo's IEP meeting.
Theo's IEP meeting went great! I loved hearing from all of his therapists about his progress. Theo's teacher talked about Theo's progress and how well he's been doing with the eye gaze. They have some pretty big goals for him! Theo's PT brought up his spine and how his current chair doesn't give him as much support as he needs. We talked about how we tried to get him an activity chair, but insurance denied it. I told them that Theo will be getting x-rays and meeting with the Orthopedic Surgeon on Friday. If he diagnoses Theo with scoliosis then maybe we will have a better chance of getting a more supportive wheelchair.
After I got home I received a call from my new contact at U.S. Access Board. He told me that adult/universal changing tables are not currently included in the ADA, but they were able to get them added into the 2024 International Building Codes (IBC). He said that their goal is to get states to pass bills that would adopt the 2024 IBC standards. This is very helpful for NEW developments, but we would need new laws to get already existing public places to install adult/universal changing tables. He told me that change needs to start at the local and state level. If more and more states adopt these standards then the federal government will start to take notice. Then we can start talking to our representatives in Congress and try to get the ADA amended. It will be a long road, but the last time the ADA was amended was back in 2010, so it's overdue! He told me that he was very excited for me and to let him know how my testimony goes on Wednesday. Will do!
That afternoon I took Theo to PT/OT and then to see Sherman at The Legacy Ranch.
I also picked up some cookies from Making Sweet Memories for teacher appreciation week!
Theo had four observable seizures today.
Wednesday, May 8th:
Today Josh and I went to the Illinois State Capitol Building in Springfield. I'm going to write about our experience in a separate blog post. Spoiler, it went really well 🙂
Theo went to school on the bus and then Ms. Jess brought him home. She watched him until we got home from Springfield later that night.
[Theo was so happy to be with Ms. Jess]
Theo had 10 observable seizures today.
Thursday, May 9th:
Theo went to school, Josh headed back to work, and I ran a bunch of errands. After school I took Theo to OT and he was very excited to go on the swing with Ms. Laura.
Theo had seven observable seizures today.
Friday, May 10th:
Theo and I went to Peoria to meet with his Orthopedic Surgeon, Dr. Akeson. First we were taken back for x-rays. The tech told me they only had one picture to take. I told her that he was supposed to have hip x-rays and a spinal x-ray. She said the only had orders for the hip x-ray. Ugh. I took Theo out of his wheelchair and laid him on the x-ray table. He laid super still and he was very proud of himself. It was then that I realized he needed a diaper change. Since they don't have adult/universal changing tables at the doctors office we had to use a small changing room (where people can change into gowns for their x-rays). The room was so small I had to leave his wheelchair in the hallway and the door open. After we were done I put Theo back in his wheelchair and we went back to the waiting room. Next, we were called back to an exam room where we met with Dr. Akeson. He looked over the x-rays and then did a physical exam. He was very happy with how Theo's right hip and left hamstring were doing. We have been stretching them daily!
The x-ray on the left is from today and the one on the right is from our last visit. If you look at the head of the femur and the hip joint you can see all the new growth.
Dr. Akeson then looked at Theo's back and ordered an x-ray. We were taken back to the x-ray room and Theo laid very still for the picture. I put him back in his wheelchair and then we went back to the exam room. Theo got really upset. He probably thought we were leaving. I don't blame him. Dr. Akeson looked over Theo's x-ray and did a bunch of measurements. Theo does have a 15 degree left curve. Dr. Akeson diagnosed him with scoliosis of the thoracolumbar spine.
He said they usually don't do anything if it's under 15 degrees, but he would prescribe a soft brace. We will go to Comprehensive Orthotics (where we get Theo's AFOs) in a few weeks so he can get measured for a brace. Dr. Akeson said that if the curve gets really bad they will do surgery, but they don't like to do surgery until kids are 12-13 years old.
Dr. Akeson told us to come back in a year and we'll do spinal and pelvic x-rays again. But he said if I am concerned then we can definitely come back earlier.
Theo and I then made the long drive up to Shorewood where we went to PT with Ms. Cody. We were only 10 minutes late, so the timing worked out pretty well.
That night we saw the northern lights because there was a solar storm. It was the most powerful storm in 20 years!
We were in the red which means we have more than a 50% chance of seeing the Northern Lights. While we were in Iceland we saw them while we were in the green and light gray zones. So, if the sky was clear we were definitely going to see them!
And we did!
Even though we just saw them in Iceland this was still soooo cool!
Theo had five observable seizures today.
Weekend:
Theo stood up super strong in his KidWalk for almost 10 minutes! He is getting so strong!
I put Theo down for a nap and 15 minutes later I hear him yell out. I checked the camera and this is what I saw... can you see him?
Theo and his friend, Puppy, tried to run away together! They ended up smashed between the mattress and the safety rails. Those things are pretty strong!
Looks like people in Canada got a show!
HAPPY MOTHER'S DAY!
Thanks for going on adventures with me! You're the best!
Theo got me a Mandalorian Angels Rally Monkey!
Brodee turned 13 on Wednesday! I can't believe he's a teenager! We got him a Traxxas Drag Slash racing truck and he had a sleep over with some friends. Looks like they had a great time!
Happy birthday Brodee!
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