New Pulmonologist & Bathroom Update

Monday, March 11th:

During our long drive to Peoria to see Theo's new Pulmonologist, I received a message from a special needs advocate who saw my post about the Universal Changing Tables. She said she reached out to Senator Castro and talked to her about the bill. Senator Castro had a few concerns about the bill. She was worried that this bill would force small businesses to put in these tables which would cost a lot and they may not have room or the infrastructure. Our goal is not to punish small businesses at all! I reached out to my Senator and got a copy of the bill. It's only two pages long and it clearly states that this bill would only apply to businesses that are 40,000 square feet or larger. So, Senator Castro didn't read the bill before she voiced concerns about it. I sent a copy of the bill to the advocate and she said she would reach out to Senator Castro again to discuss what is in the actual bill. Fingers crossed she brings it forward for a vote!

Like I said before, I don't want to hurt small businesses. This bill is targeted at large businesses like shopping malls, big stores (Target, Walmart, Costco, etc.), museums, amusement parks, airports, hospitals, schools, and interstate rest stops. How nice would it be to know that if Theo needs to be changed we can stop by any Target and there would be a safe and private place for me to change him? And if this bill is successful here than maybe other states will look into it too. It may seem like it's not a big deal, but it would help so many families.

We arrived at the hospital at 1:15 PM for our 2:00 PM appointment. As I was getting Theo's wheelchair unlatched from the van I noticed that Theo had pooped. We know there aren't universal changing tables in the Children's Hospital and I didn't want Theo sitting in his dirty diaper until at least 2:00 PM when we could get into a room with an examination table. So we had to change him in the parking lot on a massage table that is always in the trunk of our van. Theo was really upset and it was windy, so it made it hard to change his dirty diaper. We got Theo all cleaned up and then headed inside the hospital. We checked in at 1:35 PM and didn't get called back to the exam room until 2:30 PM. 

[Josh taking Theo for a walk around the hospital lobby]

We then met with Dr. Yuan, Theo's new pulmonologist. We talked about Theo’s past respiratory history and what we are currently doing to help (respiratory therapy, dulera, hydroxyzine, albuterol, etc.). He then examined Theo and found that his oxygen levels are good and his lungs sound great. We then talked about the results of Theo’s sleep study. He said that due to his oxygen levels being at 97% on average he wouldn’t recommend any supplemental oxygen. We then talked about the results of his two night oxygen test. He said that the test results look good and we need to keep doing what we are doing. He also believes that the melatonin prescribed by Dr. Stewart probably isn’t helping Theo go into REM sleep, so we can stop giving him that. Easy peasy! We will see him again in July.

Theo had three observable seizures today.

Tuesday, March 12th:

Today was a very busy day for us! Theo went to school while I went to get my allergy shots. Ms. Jess said Theo had a great day and ate half of his pouch food! 

After school we went to High Hopes where we saw Ms. Laura (OT), Ms. Cody (PT), and Ms. Jeannine (Dietitian)! We use to see Ms. Jeannine a lot at PT, but then during the pandemic she switched to Zooms and co-treated with Ms. Jen (Feeding/Speech). Theo had a great session and was showing off to the ladies!

After therapy we went to The Legacy Ranch for horseback riding lessons with Sherman and Kaylin. Theo did great and was very patient whenever Sherman stopped. We talked to Kaylin about encouraging Theo to use his elbows to hold himself up. It'll be a work in progress!

Theo had eight observable seizures today.

Wednesday, March 13th:

Theo headed off to school while Josh and I went to my favorite store, REI! We just needed a few more things before our trip to Iceland and REI still had a lot of their winter clothes out. I got two warm base layers and a flannel top, while Josh got some pants and a flannel top. It springtime so the weather can be unpredictable, so we want to be prepared for anything! I think we are ready!

Tribeca Marble came over and installed the white countertops. They look great!

At school Theo participated in a "sensory exploration." Surprisingly he liked a few of them!

[Josh caught another bunny, don't worry, he takes them to a field and releases them 🙂]

After school Theo had feeding therapy with Ms. Jen. He didn't eat a lot at school, so I was worried how he would do with Ms. Jen, but he ate three yogurt bites! YAY!

Theo had six observable seizures today.

Thursday, March 14th:

Theo had another fun day at school! They played on scooters during PE and Theo was a human bowling ball! 

After school we took Theo to OT with Ms. Laura. While we were there one of her students told me about the Gemini Giant in Wilmington. This statue has been an icon on Route 66 for 60 years. The small town loves him so much! The current owner owns both the Gemini Giant and the Launching Pad restaurant that is next door. She is very angry right now and is selling the restaurant and the statue. She said that if she doesn't get $100,000 for the statue she will destroy it because it's a "false idol." Google it if you want more info. Anyways, the town is rallying and trying to raise funds to buy the giant from her. I suggested reaching out to the IL State Historical Society to see if they can protect it by adding it to the National Register of Historic Places (NRHP). She said they were trying but they were running out of time. The auction is next week and as of right now it looks like their GoFundMe isn't going to raise enough money to be able to buy the Gemini Giant. It's so sad that a classic piece of Route 66 history is going to be destroyed.

I've never seen the Giant, so after OT we drove the 10 minutes out to Wilmington to get a few pictures. We were warned not to go onto the property, so I stayed across the street and got my pictures. The current owner parked her car (she decorated it, her house, and her fence herself) in front of it to discourage people from getting pictures.

Hopefully the small town can rally or a wealthy anonymous donor will swoop in and buy it!

Theo had three observable seizures today.

Friday, March 15th:

Theo headed off to school while Josh and I waited at home for the plumbers to show up. 

The plumbers had not come by the time I had to leave to get Theo from school, so Josh stayed behind to wait for them. When I got to school Ms. Jess told me that Theo wanted me to see him using his eye gaze. I went into the conference room and saw Theo working with his teacher, therapists, and a representative from the eye gaze company. It's such a cool device and I hope that we can get one quickly for Theo!

After school I took Theo to PT. When we got home the plumbers were there. They were able to install the floating sink and get the water hooked up. They were also able to get the shower all hooked up and running. They said they would be back on Monday to finish the vanity sinks.

Theo had ten observable seizures including one that was 74 seconds long.

Weekend:

Over the weekend Josh went to a movie with some friends, Theo stood in his KidWalk for 15 minutes, and Theo had his first shower in his new bathroom!

Another volcanic fissure has opened in Iceland. Seeing an active volcano would be so cool as long as none of the locals are in danger. We don't know if it will still be active when we are there, but we can hope!

[First time in the new shower]