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!

Adult Changing Table at Ryan Field

Monday, September 28th:

Theo and I made the trek down to the INI in Peoria to see our friend Emily Cooper with Audiology. Theo cooperated and allowed her to check his ears. His hearing test all came back the same as before, so that's good news! 

We got home in time for PT and OT with Ms. Becca and Ms. Laura. Theo took a nap on the way home from Peoria, so that helped with his energy levels for PT and OT.

Okay guys this is insane...

Why is everything so expensive?!

Tuesday, September 29th:

Theo and Nurse Patti headed to school, Josh went to work, and I worked on my travel blog posts. 

After school I took Theo to The Legacy Ranch to see Sherman and Ms. Rachel. Theo did really well during his lesson!

Wednesday, September 30th:

After I sent Theo and Nurse Patti off to school I headed to Walgreens to get some more travel vaccines. My arms are a little sore, but it wasn't so bad!

After Theo got home from school, Ms. Jen came over for feeding/speech therapy.

Thursday, October 1st:

The Postseason is here! The Angels didn't make the postseason again. So I gotta root for the Brewers (for Josh), the White Sox and Cubs (for Chicago), and the Dodgers (for my dad). 

I went to the dentist today (all good!) and I also attended an all day virtual Family to Family webinar that was put on by The Arc of Illinois. A lot of the discussions were very informative. During one of the sessions they highlighted a few of the local advocates and I was one of them!

I was able to talk about Changing Spaces for a minutes and then I answered a couple of questions.

It was so nice of them to give me and the other advocates a spotlight! 

That afternoon it was Josh's turn to go to the dentist. He needs little work done, so he'll have to go back on Monday.

Friday, October 2nd:

I received an email from someone I didn't know informing me that there are powered, height adjustable adult sized changing tables at Northwestern's new Stadium: Ryan Field! What?!

I found their website and I was in shock! They are claiming to be the "most accessible stadium ever built" and from what I can see, that may be true!

Not only is the stadium unbelieveably accessible for wheelchair users, they are claiming to have 25 private family restrooms with adult changing tables in all of them. 

Honestly, I had a hard time believing that they have all these powered, height adjustable, adult sized changing tables without seeing them for myself. I've been burned before! I posted about it on my social media pages and I tried to find actual pictures (not drawings) online, but I couldn't find any. I reached out to "information" and I actually heard back! They sent me a picture and confirmed there is a powered, height adjustable, adult sized changing table in the private family bathroom in between sections 114 and 115. I was SHOCKED!

 

It seems like they are still installing the changing tables and their end goal is to have one in each of the 25 family restrooms. I didn't get a timeline on when this could happen. But hopefully it will be before the end of the football season! I guess I need to go to a game and go find all the other tables!

Weekend:

Did you know that October is AVM Awareness Month?

On Saturday I had a meeting with my fellow Changing Spaces Campaign chapter leads. It was a great meeting and we are all very excited that Changing Spaces will be celebrating their 10 year anniversary next Saturday. 

On Sunday, Josh went golfing with his work friends. I am so happy that he is still enjoying his new hobby!

Theo at the Dentist

Tuesday, September 22nd: 

Josh took Theo to see Sherman at The Legacy Ranch and then they picked me up from the airport. While I was on my trip I finished reading "American Scoundrel: Roy Cohn's Dark Journey from Joe McCarthy to Donald Trump." I know who Roy Cohn is and all the horrible things he did along side Senator McCarthy. Well, at least I thought I did. This book was an emotional rollercoaster. Most of what I was feeling was anger and disgust. But I was also sad and amazed. I knew Cohn was evil, but this book takes it to the next level. Read it. You won't regret it.

[So super strong!]

Wednesday, September 23rd:

Theo headed to school with Nurse Patti while I fought off some jet lag and the post travel blues. Gotta get back to reality!

[Theo has been working hard at school]

Thursday, September 24th:

Theo and Nurse Patti headed off to school and I went to my yearly Dermatology skin check appointment. Everything looks good!

[Theo's art]

Josh is still working a ton, which we appreciate! He is on multiple projects right now. The client usually panics at the end of the year when they realize they have a lot more money to spend. So, they tend to start up a lot of projects at the end of the year with quick deadlines.

I've been working on getting some SWAG for our company. We bought hats, beanies, and jackets for all of our employees. I contacted a local lady who is going to embroider them for us. I'm excited to see the final results!

And I found a local guy who does amazing work with an engraving machine! He did all 90 of our Yeti cups and they look fantastic!

[Our stash!]

Friday, September 25th:

Theo had his 6 month check up at the dentist today and it did not go well.

[Oh my sweet boy]

Theo usually fights when we take him to the dentist, but today it was really rough. We couldn't get his mouth open and I've never heard someone yell so loud with their mouth shut. 

Theo scratched me pretty badly and refused to cooperate. After a few minutes the dentist called it. We all knew what was coming next. Anesthesia. Once Theo calmed down a bit we talked about options to have Theo go under anesthesia to have his teeth cleaned, get x-rays, and get sealant put in his back molars. Once our new insurance kicks in I am going to get that all set up.