Photo Shoot at The Legacy Ranch

Monday, January 22nd:

The weather up here in Chicagoland can be quite dramatic. Monday morning we got a nice glaze of freezing rain on our new snow. It was VERY icy, but Theo's school was still in session (even though other districts in the area called it off). I had to ice skate Theo down our driveway and to the bus. The bus driver said it was very slippery on the roads, but they were taking it slow and the plows were out dropping salt by the ton. Josh and I were supposed to go to Wells Fargo for an appointment, but we decided to cancel and stay home.

While Theo was at school the contractor came over and worked on the drywall (mud and tape). 

Ms. Jess said that Theo had a great day at school! He used two different eye gaze communication devices. Theo was able to use the device and tell Ms. Jess when he needed to go potty. 

He also said:

I guess he wants a party with presents or something!

At the end of the day they asked Theo where he was going. He said he was going to "visit mom." Awww!

Tape and mud takes a while because they have to let everything dry for 24 hours. It is also messy because they have to sand down the walls after the paint dries. 

Kobe scored 81 points on this day in 2006. What a legend! 

Theo had 13 observable seizures today.

Tuesday, January 23rd:

Josh, Theo, and I headed to Ottawa for Theo's yearly appointment with the general surgeon, Dr. Robertson. During our drive there Josh noticed that the van was shaking. I told him that had been happening for a week or so. I thought it was maybe because of the extreme cold weather we had been having. He said something was definitely wrong and he would check it out when we got home.

We made it to Ottawa and saw Dr. Robertson. We told the doctor that Theo's g-tube site was red and irritated. We don't usually have issues with it, but the tube is very tight and we haven't been putting a tubie pad under it because it was rubbing. Dr. Robertson examined Theo and said that he would order Theo a longer g-tube since the one he has is a little tight and that should help with the rubbing and irritation.

After we got home Josh checked on the van. I told him I took it in for an oil change, tire rotation, and ramp maintenance back in October. During that visit the mechanic told me that there was no reason to go a tire rotation because the tires all have great tread. After Josh checked the van he showed me these pictures:

[If you zoom in you can see the cords poking out from under the rubber]

Those are our back tires! Turns out the toe is out of alignment which caused the inside of the tires to wear disproportionately. Josh said we CAN NOT drive the van until the tires are replaced. I called Mobility Works (where we bought the van and where we take it to get serviced) to see if they had a wheelchair accessible rental, but they were all out. I then called Hertz, Enterprise, and Avis and none of them had regular vans available. Josh jumped on Turo and found a local van that would be available later that evening. 

We still had to take Theo to PT/OT and The Legacy Ranch for therapy, so we all hopped in the Jeep and headed out! Theo wasn't too happy about the change, but then he discovered the window and everything was fine.

After PT/OT we headed out to The Legacy Ranch. They hired Dale Ropp from Barrels & Bulls to come out and take professional pictures of Theo and Sherman. Dale and his wife travel around the country taking pictures of rodeos and other horse events. They asked us questions about Theo and then took a bunch of pictures. They are trying to raise awareness about hippothearpy and the benefits of horseback riding. I am so happy they can share Theo's story and hopefully encourage other people to try hippotherapy. It's for everyone with any ability!

[Theo gets so relaxed on Sherman that he will sometimes fall asleep]

[Sherman smiling because he sees we brought him an apple!]

[Theo feeding Sherman]

[Theo kept trying to pet Sherman, so I helped him out]

I want to thank Dale Ropp with Barrels & Bulls (find them on facebook or here) and The Legacy Ranch for sharing Theo's story! Theo's only been horseback riding for three months but we can already see all the benefits!

On our way home we stopped and picked up our rental van. I didn't take any pictures, but it was a 2023 Kia Carnival. It's not wheelchair accessible, but it is much more comfortable than Josh's Jeep and we can easily get Theo in and out of it in his carseat. 

[I got this picture from the website]

The contractor finished another round of tape and mud.

After we got home Josh drove our van to a repair shop in Morris. They said they will order new tires and get the alignment fixed.

Theo had five observable seizures today.

Wednesday, January 24th:

Theo, Josh, and I made the LONG two hour drive (in our rental van) to Lurie's Children's Hospital to see Amy Tenet with Neuromodulation and Dr. Garcia-Pierce with Epilepsy. Amy increased the frequency of Theo’s VNS, so it will essentially be on and giving Theo therapy about 1/3 of the day (up from 1/4). 

Dr. Garcia Pierce was concerned that Theo's seizures had increased, but she feels like the increase in therapy frequency from the VNS will help, so she doesn't want to prescribe Theo any new meds right now. She may want to increase his dose, so we will take Theo for bloodwork this weekend.

During a Zoom meeting before Theo got his VNS, the Neurosurgeon mentioned that the Lurie's Neurovascular Team is interested in meeting Theo. We haven’t heard from them so I brought it up to Dr. Garcia Pierce. She said she will reach out to them and let me know what they say.

Both Amy and Dr. Garcia Pierce are very happy with Theo's progress and we will see them in 6 months.

That afternoon Theo had feeding/speech with Ms. Jen and Ms. Jeannine (Dietitian) Zoomed in. Ms. Laura let us use a room at Thrive again because of the construction going on at our house. 

During our session we had Theo work on eating a "star." I broke off tiny pieces and put them in Theo's mouth. We also had him smell the "stars." He did really well and we were all impressed. 

After we got home I had a quick Zoom with my brothers to talk about our sibling trip to Japan. It's going to be amazing!

The Charger hired Jim Harbaugh! YAY! I think he will be a great addition to the team!

Theo had five observable seizures today.

Thursday, January 25th:

Theo went to school, the contractor worked on the bathroom, and Josh and I went to look at stone for the vanity.

Ms. Jess said that Theo had another great day. He ate SIX whole "stars" and then threw some of them up. Ms. Jess said he used his button and kept asking for more, but he may have gotten a little overwhelmed 🙂 That's okay! I'm glad that he is trying and that he is communicating.

That afternoon we went back to Thrive, but this time Theo got to see Ms. Laura for OT. He was showing off and did a lot of pushups for her!

We were hoping our van would be ready today, but unfortunately the tires that were delivered to the repair shop were the wrong ones. Ugh.

Theo had nine observable seizures today.

Friday, January 26th:

Theo headed off to school on the bus while Josh and I drove north to Wells Fargo for an appointment. We had to meet in person with a banker to add a beneficiary to our accounts. Unfortunately the nearest bank is an hour away 🤦‍♀️

While we were gone the contractor put in our pocket doors. The doors were a little warped, so the guys added a couple shims to try and straighten them out. They'll check on them on Monday and if that didn't work we'll have to return them and get new ones. 

As we were leaving to go pick up Theo, Josh got a call from the repair shop. Our van was ready! YAY! We picked up the van, grabbed Theo from school, dropped him off at PT, and then returned the rental van. It's so nice to have our wheelchair accessible van back! I had forgotten how much of a pain it is to put Theo in a carseat and then have to fold up his wheelchair and put it in the back of the car.

Theo had six observable seizures today.

Weekend:

On Saturday morning Josh, Theo, and I went to the Morris hospital to get Theo's bloodwork done. He's such a trooper.

[Bandaid on his hand]

I stayed up late to watch the Lakers beat the Warriors in double OT! It's always fun to get a big win during rivalry week!

On Sunday, Theo and I took Josh to the airport. He is going to spend a few days in Orlando working on our new rental with my dad and uncle Walt. I'm sure they will have a great time!