Birthday Weekend!

This week was a little chaotic!

⭐️ It was Nurse Stephanie's last week, so she trained Nurse Patti at our house on Monday and Tuesday. We are really going to miss Nurse Stephanie. Theo just loved her and he got so excited every time she came over!

⭐️ Theo's bloodwork and EKG came back good so his doctor increased his meds

⭐️ The last of our BeatBo's (aka BeBo) ran out of batteries and even after I replaced them he refused to turn on. Since he was one of Theo's BFF I will put him on the shelf and not toss him. We still love you BeBo!

⭐️ Josh got a new camera for our trip to Africa!

⭐️ Theo had lessons at The Legacy Ranch

⭐️ The Little Lobbyists are launching a chapter in Illinois! We are very excited to have them here! Join our Facebook group!

⭐️ I went to a Special Education Parent Advisory Council (SEPAC) meeting at the school. It was nice to talk to parents who are just starting the IEP journey. I have a lot of knowledge that I am more than happy to share!

⭐️ We went to the hospital for a check up with the ENT and GI. Theo's ear has been leaking for the past few weeks due to his post nasal drip. He still has a tube in his right ear. The ENT prescribed drops and said his ear should clear up in the next week.

I talked to Theo's dietitian, Jeannine, and she would really like for him to get more formula. Theo has been loosing weight over the last year and we feel like he needs more calories so his brain can continue to develop and he can continue to get stronger. The GI disagrees and thinks that kids in wheelchairs need to be in the 50th percentile. I don't think that stunting Theo's growth is the right answer. We have ceiling lifts and an elevator and a wheelchair accessible ramp. Theo doesn't need to stay small.

After we saw the ENT and GI Specialist we went to find the only changing table in the entire hospital. These FIXED HEIGHT, CHILD SIZED changing tables are such a pain.

⭐️ Speaking of changing tables, Governor Pritzker signed our bill! 

This law doesn't impact current buildings, so there is still a lot of work to do. But it's a step in the right direction! Hopefully we will see more HEIGHT ADJUSTABLE, ADULT-SIZED changing tables around the whole state soon!

⭐️ Theo tuned nine this weekend! How crazy is that?! To celebrate we went to the local Farmers Market where Josh found these really awesome snow boots. I guess he thinks he will be going back to Alaska for work this winter ☃️

Theo got me a birthday card. He's such a sweet boy!

⭐️Josh has been working and golfing a lot. I am glad that he is still enjoying both 😁

⭐️ I did a little photo shoot with Theo for his birthday! He is so handsome! Happy birthday sweet boy!

Garfield Park Conservatory

Monday, July 27th:

I received a message late last week that Governor Pritzker was going to be doing a Bill Signing for Sami's Law today! We didn't know where or when, so I kept checking the Governors website and with anyone connected to the bill. Unfortunately, we never got a call about the bill signing and as of Sunday night the ILGA website says it hasn't been signed yet. I know he WILL sign it, so I'd like to be there when he does.

Luke, Andie, Porter, and Kenna are at EPCOT today with Andie's entire family. They got matching shirts and they sent me one! I'm excited to wear them when we are all together at EPCOT in 320 days!

[It's always freezing in the basement, so I gotta wear my flannel 🥶]

That afternoon Nurse Stephanie and I took Theo to the clinic to get his bloodwork done. He was a rock star and only cried a little. I think he knew Nurse Stephanie was waiting for him in the lobby and he wanted to be brave for her!

Tuesday, July 28th:

Nurse Stephanie came over to watch Theo today.

We had some severe weather yesterday, so I was not surprised to see this on the news! We've had an insane amount of tornadoes in our area this year! 57 so far!

That afternoon we went to The Legacy Ranch for Theo's riding lessons. Sherman the tank is still injured so Theo had his lesson with Zeus. Zeus doesn't know Theo very well and it seemed like he had a hard time walking slow enough. So, Theo was bouncing a lot more than he usually does.

Wednesday, July 29th:

Today Theo, Nurse Stephanie, and I went to the Garfield Park Conservatory. I had been emailing with the Senior Director of Public Engagement and she told me that when the "EMG children’s garden opened last month, we can now officially say we have a motorized adult changing table for guests. When the lobby renovations are done this summer, we will have a second one."

I was really happy to hear that! So, we went to the Garfield Park Conservatory for the day.

When we arrived the lobby was still under construction, so we entered through the side entrance. There was a path so we didn't have any issues getting Theo's wheelchair into the Conservatory.

[Closed front door and lobby]

[Path to the side entrance]

[Side entrance]

[Sensory bags! How nice!]

We made our way through the Show House and Aroid House

and then through the Desert House.

We then entered the newly renovated EMG Children's Garden. 

This area is super cute and is a great place for kids to run around and climb! There is also a huge slide!

We found the family bathroom and I was disappointed to find a fixed height, child sized changing table, not an "motorized," adult/universal like we were told.

I really don't like these changing tables. On the vendor's website they are listed as "adult sized," which they are NOT. AND they state that they can hold up to 400 lbs. Who can lift a 400 lb person onto this table?! Fortunately, I can still lift Theo onto this table, but it's not safe and I won't be able to do that for long. And Theo is almost too long for this table. Ugh.

After documenting the table, we walked up the ramp and explored the Children's Garden. 

[Nurse Stephanie and Theo]

We then made our way through the rest of the green houses. They had so many beautiful plants!

We then headed outside and went on a walk around the outdoor paths.

[A group of bonsai trees!]

[Demonstration Garden]

[Bees! I think bees are so cool!]

Here's my facebook post about our trip to the Conservatory:

After we got home I sent a follow up email to the Senior Director of Public Engagement. I told her that we were not able to find the motorized adult sized table that she told me about. And I asked her to PLEASE make sure that the table that is being installed in the lobby is actually a powered, height adjustable, adult/universal changing table. I haven't heard back from her yet.

Other than being disappointed (AGAIN! *Looking at you, Brookfield Zoo*) with the changing table situation, we still had a great time. Theo loved strolling around and we loved walking around on this gorgeous day!

Josh wasn't able to come with us because he was playing in another golf tournament for work. 

Josh put out the raffle stuff that Northern Integrity had donated. I worked so hard on them and they turned out great!

Josh said they had a lot of fun and they also found a dumpster of raccoons 🤣 Good times!

Thursday, July 30th:

Nurse Stephanie hung out with Theo while Josh went to work and I went to see the new Spider-Man movie. It was so good! 

Friday, July 31st:

Nurse Stephanie helped Theo draw this amazing rainbow! I love it and it is going on our wall!

That afternoon Theo had PT with Ms. Becca.

Weekend:

We got these awesome tally books made for Northern Integrity! I think they look great! And yes, that is Josh working on his Jeep in the back ground.

It rained all day Saturday, but on Sunday Theo and I went for an hour long walk/jog around the neighborhood in his cool new jogging stroller. During our walk we came across a lemonade stand where we bought lemonade and a muffin from some cute local kids!