Last week of ESY and the Abilities Expo

This week was Theo's final week of ESY. I think we were both pretty bummed about it. Theo LOVES going to school on the bus and playing with all his friends. When I tell him he is going to school on the bus he kicks his legs and waves! It's adorable! I also loved being able to put him on the bus at 7:35 AM and then heading out on a long bike ride before it gets too hot.

After school Theo had PT and I listened into a LONG board meeting for our condo HOA in Florida.

Theo had four seizures today.

Tuesday, June 21st, was a HOT day with temperatures hitting 100 and the heat index being over 105. Luckily, we only had to be outside for a few minutes to get Theo on and off the bus, but that was enough to make us both sweat! 

[My beautiful flowers]

While Theo was at school I listened into the Master Board HOA meeting for our Florida properties. It was another insanely long meeting, but it's good to be up to date on issues, right?

That afternoon Theo had OT at Thrive and the therapist mentioned how much more alert he has been. 

Theo had six seizures today.

The next morning (June 22nd) we were up by 5:30 AM and I was able to watch the Kenobi finale while I got Theo ready for school. I can't say enough how much I loved this series! If you are a fan of the movies you will definitely enjoy it!

I love this picture so much! Theo has friends and it just melts my heart! 😭❤️

And he is spoiled and loves to cuddle with Ms. Jess his CNA!

[OT sensory work]

[Snack time with his fish bowl]

[Showing his newest friend his game]

That afternoon Theo had PT, Feeding Therapy, and a Zoom with his dietician. Theo is 50.8 lbs and 45" tall! So, we decided to reduce his food a bit and hope he plateaus. He is getting really heavy to lift and carry.

Theo had seven seizures today.

Thursday, June 23rd, was a bit cooler, so Theo played outside at school.

[Power nap in the swing]

[PT at ESY]

That afternoon Theo had OT and I ordered macarons for all of Theo's teachers, aids, nurses, therapist, bus drivers, and bus aids.

Theo only had three seizures today!

On Friday, June 24th, Theo took 168 macarons to school to share with his amazing helpers! 

Theo's not much of a cuddler with me, but he LOVES to cuddle with Ms. Jess! She took such great care of him during school and we are excited for her to come and babysit Theo in the future.

[All the cuddles!]

[Whatever side you are on, this is very important to remember]

Josh has been working hard at work. He is still the Chief Inspector and enjoys the challenges that it brings.

Josh brought home some more rocks and built another path. I think they look great!

Theo had three seizures today.

On Saturday, June 25th, Josh, Theo, and I drove up to Schaumburg (by the O'Hare airport) to attend the Abilities Expo. We were interested in checking out the accessible cars and the home lift systems, but we had a lot of fun walking around and seeing all the different booths.

[Rock climbing wall]

[Wheelchair sports]

These lift systems are really cool. They can install ceiling tracks throughout your entire house, which makes it easier to lift and transport your loved one safely. Like I said before, Theo is over 50 lbs, so we will be needing a lift system pretty soon.

Theo only had TWO seizures today!

On Sunday, June 26th, I went for a bike ride and then we all went to Costco to walk around. 

My skin is starting to peel and when I sweat it causes these bubbles to form. It's like sweat blisters and it's kinda gross.

Theo had five seizures today.

The next morning (June 27th), Theo and I headed to Ottawa. Our first stop was the lab at the hospital so Theo could get his blood drawn for Neurology. After that we went and saw his Pediatrician for a pre-op check up. Theo will be having his Bilateral Orchiopexy For Retractile Testis (done by Urology) AND Left Myringotomy And Ventilation Tubes Possible Bilateral Ventilation Tubes Adenoidectomy Possible Tonsillectomy (done by ENT) on July 14th. Theo really needs this procedure and we are hoping it doesn't get postponed again. When I went into Theo's room the other morning at 2:00 AM to give him his meds, I noticed that he had some blood in his ear. I don't know if this has to do with a tube falling out or if his ear drum was ruptured by fluid build up, but either way he needs this procedure.

[Blood draw]

[Power nap before seeing the doctor]

We had another consult for our laundry room make over today. Hopefully they will be able to finish by the end of July.

Theo had four seizures today.

June 28th is Election Day in Illinois! I sent in my mail in ballot so I'm good to go! Please get out and vote!

I spent a few hours today packing and then took Theo to get his first COVID shot and that afternoon he had OT.

He was so brave!

Theo and I are heading down to Ohio tomorrow morning, while Josh will drive down on Thursday and Brodee will fly in Thursday night.

[Got to take some buckeyes to the buckeyes!]

Theo had two seizures today.

Orthopedic Surgeon, Farmers Market, & Fathers Day

The traditional gift for the 8th Wedding Anniversary is bronze. Josh made me these amazing earrings and necklace! I am excited to wear them on our next date night. 

On Monday, June 13th, Theo went to school and I forgot to send a snack with him. His CNA sent me a messaged and asked if it would be fine if she tried to feed him applesauce. I told her that was fine and then she sent me this photo:

Theo seemed pretty into it!

We have two bird houses in our backyard. One was occupied by doves and the other one was empty until today. Looks like a robin's nest to me!

That evening we had a consult with Making Home. They are a local company run by two ladies who specialize in home renovations. They seemed really excited to build us a laundry room and hopefully we will get a quote from them soon.

Theo had nine seizures today.

The next morning, June 14th, Theo went to school. He had OT, PT, and speech! He was super busy and came home super tired.

[Theo was signing "more" during snack time!]

[Thumbs up during speech]

That afternoon we went to Costco so we could be out of the house when the cleaning ladies came over. We then went to OT.

Theo had seven seizures today.

Wednesday, June 15th, I sent Theo to school and let his crew know that I would be picking him up from school, so we could head to Peoria for a doctors appointment. His CNA, Ms. Jess, met me at the side door and passed off Theo. I put him in the car, gave him some food and meds, and then headed off to Peoria. Theo fell asleep immediately (he usually naps at this time) and slept a good 20 minutes UNTIL I hit construction and had to stop the car. This woke him up and he freaked out! He just screamed and screamed. I thought he would calm down again once we started moving, but I was wrong. He screamed himself hoarse. It was awful. After a hour I was able to pull over and lay Theo down in the back. I vented him and told him that he needed to relax and listen to his music. After I got him back in his car seat we headed down the road. The next 40 minutes were hit or miss. The poor kid was so tired, but thought it was a better idea to just scream instead of taking a nap.

After a LONG 2 hours, we finally made it to the Orthopedic Surgeon's office. I put Theo in his wheelchair and he immediately fell asleep. Ugh. 

We went and got his hips x-rayed and then headed back to the waiting room.

We were then taken to the exam room where Theo fell asleep again.

Dr. Akeson then came in and immediately went to check on Theo's heel sore. He was happy to see that it was healing nicely and said we could probably get Theo's AFO's and SMO's back on soon. We talked about Theo's x-ray. He said it looks great and there was a lot of new bone growth.

Dr. Akeson then checked on Theo's hips and stretched him out a bit. He was impressed with how well Theo was doing. We will be back in November for another x-ray and check up.

Theo slept for about an hour on the way home, which he needed!

[More art from school]

Theo had four seizures today!

On Thursday, June 16th, Theo went to school and then to Thrive for OT.

[He was actually really into the vanilla yogurt]

[Sitting up like a big boy and clapping for himself!]

Josh brought home some rocks from work. They are digging out for a bore and a lot of pretty blue rocks were being unearthed. Josh thought they would look good in our front yard and I agree.

My buttercups are blooming!

Theo had five seizures today.

On Friday, June 17th, Theo had a dance party at school. Ms. Jess made sure with me beforehand that Theo would be okay with the strobe lights. I told her he should be fine, but to keep an eye on him.

[It seemed like he was having a great time!]

While Theo was at school I went and got a haircut. It has been a LONG time since I cut it and it was much needed!

Theo had six seizures today.

On Saturday, June 18th, Josh, Theo, and I headed north to the Naperville Farmers Market. There were a few new vendors and we bought some cheese, strawberries, pies, and avocado toast!

[The best avocado toast EVER!]

Theo only had three seizures today.

The next day, June 19th, we celebrated Father's Day! Theo gave Josh Andes Mints and a nice card. Josh also got a Apple Watch last weekend 🙂 Thanks for being such a great father to Theo! He is just obsessed with Josh and it's ADORABLE! 

Later that morning I went on a long bike ride. It was tough and my back was hurting by the end, but I felt pretty good about my mileage. I am definitely going to invest in some proper padded bike shorts!

I put on sunscreen everywhere but my forearms and hands. Oops! There is not a lot of shade out there in the corn fields.

[He loves to watch his videos]

While I was on my ride, Josh worked on the rock path.

I think it looks beautiful and adds a lot of contrast!

More flowers!

I've been noticing that something is eating my rose leaves! We got some spray, so hopefully that will help!

[I was right! We have robin eggs!]

That evening Josh went with a couple of his co-workers to throw axes and knives. I think they are going to make it a regular thing 🙂

[I think this is important to share]

Happy Father's Day to these amazing men!

Theo had five seizures today.