BYU Victory and The Dollinger Family Farm

Monday, October 12th:

Theo didn't have school today due to Indigenous Peoples' Day, so we went to Walgreens to get his flu and COVID vaccines. Theo was VERY brave and didn't even cry! Remember, get your flu (vaccine) before boo! 👻

After Theo's shots we came home and he took a nap before Ms. Becca and Ms. Laura came over for PT and OT. 

Tuesday, October 13th:

I sent Theo to school in his salmon button up shirt because it was picture day! I told Nurse Patti all the ways we can get him to smile. I hope one of them worked!

That afternoon we took Theo to his lessons with Sherman at The Legacy Ranch. He seemed very relaxed and had a great ride!

Wednesday, October 14th:

While Theo and Nurse Patti were at school I met with Theo's Dietitian. We talked about Theo's food intake as well as his growth (or lack of). Theo has stopped losing weight, which is strange because we haven't increased his food intake in a few months. AND he appears to be starting puberty. For a kid with CP, developmental and physical delays, and brain tissue loss, he shouldn't be going into puberty early. After a great brainstorming session we decided that it would be a good idea to take Theo to see an Endocrinologist. We are going to see Theo's Developmental Specialist in a couple of weeks, so I am going to see if she can recommend someone.

Thursday, October 15th:

Nurse Patti called in sick, so I got a wake up call from Maxim at 4:30 AM. Needless to say, after I got Theo sent off to school I took a nap 😊

That evening I went and saw Little Shop of Horrors with Ms. Laura at the Coal City High school. Of course, they did a great job! That's why we keep attending their shows!

Friday, October 16th:

It was a bit chilly this morning which was really nice! Theo even wore pants! I love that fall is finally here!

I went to pick up Theo from school and while I was there I had a nice chat with Nurse Brad and Ms. Kate. They said that Theo was doing great so far this year!

After we got home Ms. Becca came over for PT. 

*****

Earlier this week there was a mass shooting at an elementary school in Oregon. I get so upset every freaking time this happens. I get sad and then I get mad. This time it was different. The shooter targeted a special needs classroom. He shot and killed disabled children and their teacher. He shot a little disabled girl in the face and she is currently fighting for her life in the hospital. 

I think about this scenario all the time. I've brought it up multiple times to Theo's principal and teacher. They tell me that if there is a shooter in the school that their plan is to shelter in place and hide. Theo can't hide. Theo can't be quiet. Theo wouldn't understand. So, essentially they are sitting ducks.

My heart hurts and I can't stop crying. It shouldn't be like this.

Weekend:

On Saturday we watched a very exciting #8 BYU vs #2 Notre Dame football game. It came down to the last few seconds and we WON!

Five of the seven teams ranked above us lost on Saturday. As a result, we moved into SECOND place! 

"Rise and shout the cougars are out!"

On Sunday we took advantage of the nice fall weather and went to the Dollinger Family Farm. Theo was in a bad mood (he was tired), so we didn't stay long. But it was nice to get out of the house for a few minutes.

[The most adorable highland cows!]

[Theo with a baby donkey]

We got some fresh apple cider donuts and some of Grandma's fudge. I love the fall!

That afternoon Josh went golfing with some of his work buddies. They are trying to get in a few more outings before it gets too cold.

Theo and I stayed home and watched football. The Chargers are now 0-6. It's so embarrassing. Yet here I am, still supporting them. Bolt up!

And just a reminder that if you see a adult sized changing table in the wild, make sure you report it to our map!

Orthopedic Surgeon, 10 Years of Changing Spaces, and Seinfeld

Monday, October 5th:

A couple of weeks ago one of Representative Briel's staff members reached out to me to see if I could come speak at a press conference on Wednesday. Unfortunately, Theo had an important doctors appointment that I couldn't cancel. So, instead I recoded a video that they could play at the press conference. I would have been more comfortable speaking in person, but I was happy to do whatever I could for Representative Briel. In my video I spoke about Changing Spaces, Theo, and Sami's Law. I talk a lot about Representative Briel's fight to get our bill passed and how it would not have happened without her.

I was able to write my speech and record it all within a few hours. It was 6 minutes long and I cried twice, but I didn't know how to edit it, so I sent the entire unedited video.

 

We'll see how it goes on Wednesday!

And this is why I don't support permanent Daylight Saving Time. Sorry!

After recording my video I went to pick up Theo and Nurse Patti at school, so we get home in time for PT and OT.

Tuesday, October 6th:

Theo and Nurse Patti went to school, Josh headed off to work, and I worked on my travel blog posts some more. I went through my memory books from my childhood and I found my journal pages from 1995. That was the year we went on vacation to the Pacific Northwest. It was funny to read back through my thoughts and see the old pictures!

See here for more!

Eventually I want to scan all of my childhood books and post them. But that will take a while!

That afternoon I attended a webinar about the Olmstead act and what the future looks like for disabled people. What's going on right now is not okay and I am worried about the cruelty of the people in charge.

After the webinar I took Theo to The Legacy Ranch for his lessons. He is continuing to do great with Sherman! I am so glad that he is back!

Wednesday, October 7th:

Before I left on vacation we noticed that a bump on Theo's hip surgery scar was getting bigger. I sent a picture to Theo's orthopedic surgeon, Dr. Akeson, and he ordered an x-ray. We got that done and while I was on vacation Dr. Akeson looked at the x-ray and said that he wanted to see Theo in person. 

So, Theo and I headed down to Peoria to meet with Dr. Akeson. He took a look at Theo's legs and determined that it was time for the hardware in his legs to come out.  

We looked at Theo's past x-rays and you can see how great his bone growth as been since surgery back in April 2022.

Dr. Akeson told me that the surgery would be an outpatient procedure with a pretty quick recovery time. I asked him about pain management, when Theo could go back to therapy (Sherman, PT, OT, etc), and if we could have any other procedures done at the same time. We decided that I would reach out to audiology to see if they want to do an sedated ABR, the ENT's to see if they want replace Theo's left tube, and Genetics to see if they want some of Theo's skin. I also brought up Theo's tight left hamstring and right hip. Dr. Akeson said that he can do another tendon lengthening on those. We feel great about our plan and surgery is scheduled for early next year. 

While I was at Theo's doctors appointment I started getting text messages from Representative Briel's team. They said the video I sent was fantastic and they were very excited about it! I hope it helps!

[Josh is ready for baseball!]

Thursday, October 8th:

Theo and Nurse Patti went to school while Josh and I went to work.

Josh has a much cooler job than I do.

Friday, October 9th:

Theo went to school and had another great day!

Saturday, October 10th:

Happy 10th Anniversary to The Changing Spaces Campaign! Please go find your local state chapter and lend them your support. Everyone deserves dignity!

Sarah from the Wisconsin chapter wrote this great blog post and made a short video. Please check them out! Both are fantastic!

Saturday night Josh and I went to The Chicago Theatre to see the legendary Jerry Seinfeld! My favorite standup of all time is "I'm Telling You For The Last Time." I pretty much have it memorized 😊 

We were in the 4th row and it was soooo worth it! Seinfeld is very expressive, so if you are going to see him get as close as you can!

I was laughing so hard that my cheeks hurt!

We had such a great time! Thanks for the laughs, Jerry!