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!

Theo had seven observable seizures today.

Weekend:

On Saturday Josh had to work, so Theo and I ran to the bakery to get him some treats for Father's Day.

[Salted caramel, peanut butter, Oreo, and chocolate Sunday cupcakes with buttercream frosting 😋]

Happy Father's Day, Josh! Theo thinks you are the best "dadadada!" We love you!

And Happy Father's Day to my dad! Thanks for always being up for an adventure!

First Week of ESY and a Giant Wheel of Cheese

Theo will be attending Extended School Year (ESY) for the next four weeks. He goes to school Monday to Thursday from 8:00 AM to Noon. It's an hour earlier than his regular school, so the time change is going to take a little bit of getting used to. In addition to ESY Theo will be going to OT twice a week, PT twice a week, feeding/speech once a week, horse therapy once a week, and seeing the Dietitian once a week. 

Monday, June 3rd:

I didn't receive a call from Theo's ESY bus driver last week, so I didn't know when the bus was coming for him. I figured it would be here 45 minutes before school starts, so I got Theo ready and then we went for a walk. I told myself that if his bus wasn't there by 7:40 AM I would just drive him myself. Luckily, the bus showed up at 7:15 AM. After a bit of confusion they got Theo loaded and they headed off to school!

I knew Ms. Jess and nurse Brad were going to be at ESY, so I wasn't worried about Theo at all! 

The first week of ESY has a "Summer Olympics" theme. So a lot of their activities revolved around the Olympics! Theo's ESY teacher is Ms. Kathy who is a retired Special Ed teacher. She seems really nice and very excited to work with all the kids this summer!

Theo rode the bus home, which was great and gave me time to work on a few projects at home.

Theo had three observable seizures today.

Tuesday, June 4th:

Our day starts pretty early around here! Josh is up and out the door by 5:15 AM and I make and give Theo his meds at 5:30 AM. Unfortunately, Theo thinks that he needs to wake up when his dad does 🤦‍♀️ 

The bus came for Theo even earlier today (7:05 AM). It sounds like he had a great day at school and they made a lot of crafts!

After Theo got home from school he had a quick nap and then we went to PT with Ms. Cody and then to see Sherman!

[Pipeline work]

Theo had four observable seizures today.

Wednesday, June 5th:

After I got Theo on the bus I had a Zoom meeting with Kisha Smith who is one of the co-founders of the Changing Spaces Campaign. We chatted for over an hour about her advocacy group, our experiences with a lack of changing tables, and what the role of the chapter lead is. I told her that I want my friend, Renee, to lead the IL chapter because of all the work she's done to get Sami's Law passed. After we chatted I reached out to Renee to see how she feels about leading the chapter. She told me that she can't do it right now, but she thinks I should start the chapter and then she will join me once things calm down a bit. I think that's a great idea!

Theo had another great day at school! They made more art and they got to meet nurse Brad's puppy!

I picked Theo up from school and took him to OT with Ms. Laura.

Theo had five observable seizures today.

Thursday, June 6th:

Theo was up early again and that made me worried since we have a very busy schedule today!

[Theo tried kiwis and bananas!]

After school I took Theo to OT and then we went and saw Sherman for a makeup lesson!

Josh saw these guys at work. They were cleaning (?) one of the blades of a windmill. Looks kinda scary!

Theo had four observable seizures today. 

Friday, June 7th:

Theo does have ESY on Fridays, so we hung out at home and then went to PT. 

[Tummy time on our swing]

[Sitting up super strong!]

[Theo cuddling with Puppy - so sweet!]

Over the weekend Josh worked on his Jeep. It has over 160,000 miles, so I think this may become more and more common. 

[Why did we buy property in Florida?!]

On Sunday night Ms. Jess came over to watch Theo so Josh and I could go to dinner. We got dressed up and headed to Gaia Ristorante Italiano. 

We got a large crab cake appetizer to share and a couple of drinks.

Josh ordered the carbonara and I got the pasta alla ruota. They brought out Josh's pasta and then they rolled out a huge wheel of Parmigiano Reggiano with pasta and grilled chicken. The chef heated up the cheese, dumped in the pasta, and mixed it all together!

It was soooo delicious! 

After dinner we went to a fancy cookie place and got some dessert. Thanks Ms. Jess for babysitting! Theo had a great time!

Week Between School and ESY

Since Theo was off from school this week, he had to come with me to run some errands. I took him with me to get my weekly allergy shots. I knew he would be a little nervous being in a doctors office, so I had him wear his "cool guy" sunglasses inside the building. He stayed very still whenever someone said "hi" to him, so he did a good job hiding!

Theo's g-tube area seemed to be bothering him. He had a little granulated tissue, but that hasn't bothered him in the past. I had a feeing there was something going on internally. We changed out his button and there was some blood on the balloon. We replaced it with a new one and I sent pictures to his surgeon, Dr. Robertson.

[Looks good - if there was an infection the whole area would be red]

[Little bit of granulated tissue]

[Balloon]


Dr. Robertson told me to put GranuLotion on the granulated tissue and to stabilize the g-tube. It's likely that the tube is causing internal irritation, so stabilizing it will help calm things down. 

[Message from the doctor]


[Got it!]

Hopefully this will help Theo feel better!

[History]

I'm trying to get Theo to like The Price is Right. It's growing on him, but he still likes Wheel of Fortune better.

I've been talking to a local travel agent about my sibling trip to Japan next year. She said she's booked plenty of trips to Japan and has no problem booking all the Disney stuff. I was excited to have her as our agent, but then she started not replying to my emails and anytime I heard from her she was short and didn't answer any of my questions. I told her that if this project was too big and she didn't want to be our travel agent anymore that would be fine. She said she still wanted to be our agent.

I started getting nervous when she hadn't replied to my last two emails (that were sent two weeks apart). I reached out to my old travel agent, Kathleen, who has booked all of our large trips over the last few years. I didn't ask her to book this trip because I knew she wasn't as familiar with the Disney booking situation and that's where I kept getting stumped. She said she would be happy to book our trip, but she would need additional help to book the Disney side of things.

I jumped on the internet and found a cool website, Travel Leaders, that has a ton of travel agents listed on it. You can filter the agents by geographic location and destination specialities. I found one lady, Christina, that I thought would be a good fit. She was highly rated and her first two loves are Japan and Disney! I sent her a message and we set up a Zoom for the following night.

We ended up chatting for over an hour about our trip! She is so excited to be our travel agent! She explained that the Asia Disney Parks are very different than the ones in the US and booking can be a bit complicated. The hotel dates only open up THREE months in advance, so you have to be online and ready to click at the very second they are released. She said she can't book them for me since the Asia Disney's don't recognize travel agents. Once we have a plan she would be on the phone with me and walk me through how to book those hotels. For the rest of the trip (Flights, tours, hotels, etc) she would be able to book everything on our behalf! 

I sent Christina my itinerary and our budget and she asked me why I wasn't a travel agent. Seriously. Maybe in another life! I have a good feeling about her and I'm excited to move forward with all the trip planning!

After we made things official, I reached out to my local travel agent and Kathleen and let them know that I found someone else to help me with this trip.

While Theo was at PT I walked over to the bakery, Making Sweet Memories. They had so much good looking stuff, but they were closing soon. I took pictures and brought them back to the clinic. I showed the ladies there my pictures and asked if they wanted anything. I ended up placing three orders and the bakery lady was very happy! I got a slice of coffee cake, a cinnamon roll, and a couple buckeyes 😋 

Theo likes to be on the floor and he only tolerates sitting in his activity chair for about an hour. He out grew his Special Tomato floor sitter last year and I donated it to his old school. I hunted for a second hand size 3 Special Tomato but had a hard time finding a local one. So, I just bought a new one. It arrived on Saturday and Theo was very excited to sit up super strong! 

Josh had another long week at work. Mainline welding is done, so things should start to calm down now!

On Sunday we went to Costco for our family outing! Theo still loves to go on walks 🙂

Theo will be attending ESY this month. It's four days a week from 8 AM to Noon. I think all of his friends from his class will be there as will his teacher and Ms. Jess. I'm sure they will have a great time playing for the next four weeks!