Here I am: Joining Changing Spaces

Monday, June 10th:

After I got Theo on the bus and Josh went to work, Amy from Access Elevator stopped by. Theo wished for an "accessibility package" from Make A Wish. We are hoping to be approved for a ceiling lift in the family room, a ceiling lift in Theo's room, and a stair lift for the basement stairs. Amy evaluated our home and thinks that the lifts will really help us with Theo. She is going to send a quote to Make A Wish and hopefully it gets approved!

Theo's class walked to the local park. Theo went down the slide. He's so brave, but he didn't like it 😬

[Theo's new art]

That night Luke and I booked our flights for our trip to Hong Kong, Shanghai, and Japan next year! I am so excited!

Theo had five observable seizures today.

Tuesday, June 11th:

Theo and I headed to Peoria to see one of our favorite doctors, Dr. Steve! We knew it would be a long appointment since Theo needed his eyes dilated, so Josh met us there to give me a hand. First they checked Theo's eyes to make sure he has the right prescription, then they put drops in his eyes to make them dilate, and then Dr. Steve checked Theo's optic nerve.

After Dr. Steve was done we chatted about Theo's progress. He was happy to hear that Theo has been using an eye gaze at school to help him communicate. Dr. Steve told us that Theo does need a new prescription, but that's normal for growing kids. He then told us that we would see him again in one year! YAY! But then Dr. Steve told us that he would be retiring at the end of next year. NOOOO! We are so sad that he is retiring, but he deserves it. He could have retired a long time ago, but he wanted to make sure his "kids" were left in good hands. The doctors that will be taking over for him have been working under him for a few years, so he is confident all his "kids" will be well cared for.

Theo sees 14 doctors regularly (at least once a year) and we are in touch with nine additional doctors (we see them maybe once every two years). Of the 14 regularly seen doctors we now see eight of them once a year, one every eight months, four every six months, and one every four months. It's good news that so many doctors only need to see him once a year. It means that Theo is doing well!

[Theo's eyes still dilated hours after his appointment]

After Dr. Steve we drove back home so Theo could take a nap before we went to see Ms. Cody at PT.

Theo had six observable seizures today.

Wednesday, June 12th:

After Theo went to school I headed to the grocery store for my routine shopping. When I walked in the door I saw this beautiful display:

Of course, I had to get a pack and a 1/2 gallon of milk 🙂

I got the Dark Side (red filling with bad guys on the cookies). Guess I'll have to go back and try for the Light Side (blue filling with good guys on the cookies).

When I picked Theo up from school I was informed that he had a crabby day and he did not use soft hands with Ms. Jess. Theo has started to pinch and hit when he gets frustrated. We have been telling him that he needs to "be nice" and "use soft hands" with everyone.

After school I took Theo to OT with Ms. Laura and then we had feeding/speech with Ms. Jen and Dietitian time with Ms. Jeannine.

Theo is obsessed with his puppy that glows and signs bedtime songs. I'm worried that it won't last forever so I bought a few backups. Theo was very happy to have them all keep him company at bedtime.

[Puppy is still his current favorite!]

Theo had seven observable seizures today.

Thursday, June 13th:

Theo had a much better day at school! He used soft hands and had more patience. We are working on sharing and being patient at home (and in the car).

Theo wrapped up his second week of ESY. We are half way done 😭😭 I wish it was longer! It's so good for Theo to be at school, but I know his teacher and aids need breaks.

After school I took Theo to see Ms. Laura at OT. Theo got to practice sharing and patience when another friend at the clinic was on the swing. Theo kept an eye on him, but he did a good job sharing.

I told Kisha with Changing Spaces that I was ready to lead the Illinois chapter until Renee can join me. She was very excited to hear this! I made a Facebook group (come join) and I joined a private FB group with all the other state leaders. I am so excited to learn from them and to be an advocate for a good cause.

Theo had five observable seizures today.

Friday, June 14th:

Josh headed off to work early today (like he does every day), while Theo and I stayed at home. I hate being trapped inside but it was hot and humid outside, so I didn't take Theo for a walk.

That afternoon we went to PT to see Ms. Cody. We came up with a cool way for Theo to practice crawling! He even tried to move his knees! YAY Theo for being super strong!