Monday, July 8th:
I got home last night from Ohio and this morning Theo and I drove two hours south to see his Pulmonologist. We talked about Theo's recent colds and I asked Dr. Yuan if there is anything extra we can give Theo when he gets super mucous-y. He said he can prescribe something for the nebulizer, but he can only have it every 6 hours AND ONLY IF he is very congested. We also got an updated "Asthma Action Plan" for school and another inhaler extension. Dr. Yuan did a quick physical (ears, mouth, listening to lungs) and said Theo looks and sounds good. YAY! We will see him for a followup in December.
Tuesday, July 9th:
While I was in Ohio I got a job offer. Josh's office manager is going on another job and they need someone to take over for her. I submitted my resume and told them I could do the job, but I would have to work from home. There was a little pushback on that, but once they realized they wouldn't have to pay me per diem, they offered me the job. The current office manager is coming next Tuesday to train me. My job will mostly consists of organizing and uploading paperwork. I pretty much already have three jobs that I don't get paid for (caregiver, condo manager, Changing Spaces chapter lead), so it'll be nice to work for a paycheck!
Ms. Jess came to watch Theo, so I could go run errands. First I went and got a drug test, then I got my allergy shots, and then I ran to the grocery store. Theo and Ms. Jess looked like they had a great time!
[Ms. Jess' mom grew us some tasty veggies! Thank you!]
That afternoon I took Theo to CPO, so Cole could adjust his TLSO vest. We went from there right to PT and then to see Sherman. It was a busy day!
[Third times a charm! I finally got the light side Oreos! They have blue filling and pictures of the good guys on the cookies!]
A few months ago we found out that Buc-ee's was going to be building their first store/gas station in Ohio. Changing Spaces Campaign saw this as an opportunity and asked Buc-ee's to install an adult/universal changing table at their new location. Buc-ee's said no because they are not legally required to. And that is true. The 2024 International Building Codes do include adult changing tables, but the code is not enforceable unless the states adopt it into law. People just don't understand how hard it is to travel with someone who needs an adult/universal changing table to safely get changed.
We wrote letters to Buc-ee's and asked them to reconsider, but they won't. A representative from Buc-ee's was scheduled to be at the Huber Heights Planning meeting on July 9th. They need permission from the Board to put in their large sign. Changing Spaces put out the word and asked for people to go to the meeting to voice their concerns. Jennifer Corcoran, the Changing Spaces Ohio Chapter Lead, is very active in the community. She was able to spread the word and got two local new stations to cover the event.
Even though my parents live an hour away from Huber Heights, they drove up for the meeting!
[Jennifer and her son being interviewed]
My parents showed up with a poster of Theo and the two new agencies asked to interview her too! Here are the new clips: Dayton Now and 2 News.
After being interviewed my parents went into the meeting. A few people spoke and they said the meeting was very interesting. A group of people even offered to pay for the complete cost of the changing table, but Buc-ee's wouldn't budge. They said it wasn't about the money. From what I understand, if a retail store is over a certain square footage they are required to put in a certain number of toilets and a separate "family bathroom" (which is where the changing table would go). Even though the Buc-ee's store will be over the square footage threshold they don't have to put in a family bathroom because they are technically not a "retail store" they are a gas station. It just makes me sad. I know they don't legally have to put in the family restroom, but they should. It's the right thing to do.
The Special Needs community lost this battle, but we will continue to fight.
Thank you mom and dad for going to the meeting and for talking to the press. Your support means so much to me and Theo!
Wednesday, July 10th:
The next morning, Theo, Josh, and I headed to Lurie Children's in Chicago. This is why I don't mind going to Peoria for Theo's appointments. 99% of the time it takes us 2 hours to get there. But with going into Chicago it can take anywhere from 55 minutes to three hours!
We left early and got to the hospital 30 minutes early. Luckily, Amy with Neuromodulation was available to see us a tad early. We talked to Amy, her nurse, and a lady from the VNS company for a few minutes and then there was a knock at the door. It was Theo's Epilepsy Specialist, Dr. Garcia Pierce, and one of her students. I love it when we are able to see them together because clearly the VNS and Epilepsy overlap. They were very happy with how Theo has been doing. I told them about his long seizures and they decided to increase the intensity of the VNS therapy. This should help break up the longer seizures and any clusters. Amy said to come back in a year to see her unless there is a problem. That's great news! We will see Dr. Garcia-Pierce at the end of the month for our scheduled appointment.
[Please don't park in the hash marks. They are there for a reason!]
While we were gone our bathroom contractors came over to fix the hole in our wall.
[Much better!]
That afternoon Ms. Jen came over for feeding/speech and Ms. Jeannine Zoomed in.
Thursday, July 11th:
Theo and I hung out at home and did a lot of activities. I had Theo wear his vest on and off for an hour at a time.
[Despite the heat, my flowers are doing well]
Friday, July 12th:
Ms. Jess came back to watch Theo today while I ran some errands. She sent me some pictures of Theo being super strong!
Josh usually gets home around 6:00 PM, so he only has an hour to play with Theo before bedtime. This is Theo's favorite time of the day!
Weekend:
We had a VERY hot and humid weekend with scattered thunderstorms. We usually don't go anywhere, but we definitely were not going outside this weekend! Stay cool everyone!
[Theo watching the "bikes"]
[Taking a nap with his vest on]
[Josh wants a pizza oven. I told him he should get this one 😁]
[Theo in the swing at PT last week when I was in Ohio]
People who know me well know that I follow politics and the news, but I'm not very political. I don't post much on social media or my blog about my political views. I've voted for people on both sides of the aisle and I'm not fond of most politicians. However, this is awful. The assassination attempt on President Trump was a heinous act. We are better than this! We are a democracy. We solve our problems at the ballot box. We don't assassinate those we disagree with. Everyone needs to tone down the violent rhetoric. Stop, just please stop.
I'm glad that Trump is okay and my heart breaks for the families and friends of the person that was killed and those who were injured.
