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!

Frozen Van Doors and Packers

Monday, January 15th:

It was a very chilly morning and we had ice INSIDE our house!

Theo didn't have school today due MLK Jr Day, but it would have been cancelled anyways due to the -35 windchills! The three of us stayed at home all day while the contractor crew worked.

The vanity guy sent us a sketch and we gave him a deposit to build it. He will get to work on this project and the vanity will be installed after the tile is in.

The electrical work was completed in the afternoon, but we had a plumber at the house until 10:30 PM! They have an inspection coming up and they want to meet the deadline!

Another fissure opened in Iceland and the lava is destroying a small village. Luckily, the village was evacuated and no one was injured. I'd really love to see lava when we are there, but not like this! 

We've had to bathe Theo in our shower while his bathroom is under construction. It's doable.

Tuesday, January 16th:

It was only -24 when we had to leave for the hospital the next morning. It was pretty brutal.

 We had to park the van outside since the contractor had taken over our garage. Unfortunately, the van sliding doors were frozen shut, so we had to get Theo and the wheelchair in through the front passenger door. Theo was not very happy about having to sit on the back bench for a few minutes while I got the wheelchair set up! He doesn't like change!

 It was a huge pain, but we got it figured out!

[On our way to Peoria! School was cancelled anyways, so we sent in this picture for Theo's e-learning]

The air temperature was so much colder than Lake Michigan's water temperature, so it created this crazy fog.

By the time we got to Peoria it had warmed up a few degrees and we managed to get one of the van sliding doors open. None of the electrical components (including the ramp) would work, but it's better than taking Theo and the wheelchair out through the front door again.

We took Theo to get his ultrasound and then we went to see Nurse Beth Speckhart at St Judes (Dr. Kumar was upstairs in the ICU with some other patients).

While we waited to see Nurse Beth we were given lunch. They had pulled pork sandwiches, fruit, veggies, soda, water, gatorade, brownies, and cookies! After I started eating the brownie I realized that it was certified gluten free and it was delicious! I texted Andie to see if she had heard of this brand, of course she had, but I wanted to make sure. I'm so happy that there are so many delicious CGF foods out there!

Nurse Beth then came in and examined Theo. She was happy with his progress and so happy to hear that he was taking horseback riding lessons! Most kids with hemihyperplasia need to have ultrasounds done every three months until they are seven years old. That is when the risk for tumors is the highest. She said that since Theo hasn't had any signs of tumors it's likely that his appointment in April will be his final one! She will talk to Dr. Kumar and let me know what she thinks. YAY! 

While we were gone the contractor did more plumbing work in preparation for the inspection on Wednesday. 

[Our basement is a bit dirty]

Wednesday, January 17th:

Today is the last day of our extreme deep freeze! But cold weather is still coming, but it shouldn't *knock on wood* be -35. We got Theo all bundled up and sent off to school. The inspector came and everything looks good! Now the contractor can start putting up dry wall!

After school I took Theo to Thrive (where he usually has OT with Ms. Laura) to meet with Ms. Jen and Ms. Jeannine. We usually see Ms. Jen at our house on Wednesday nights, while Ms. Jeannine Zooms in. But since the contractor is loud we asked Ms. Laura if she had some space for us at the clinic. She did! 

Theo LOVES Ms. Laura and he LOVES to swing at her clinic. I was worried when we pulled into the parking lot that Theo would think we were there to swing and play with Ms. Laura. So the whole drive down I told Theo we were going to see Ms. Jen and Ms. Jeannine, he kept hitting his knee with his fist ("YES!") so I knew he understood. We arrived at Thrive and Theo was very excited to see Ms. Jen and Ms. Jeannine. When we got there Theo saw Ms. Laura. He gave her the biggest smile, but I told him that we were not there to see her and he seemed okay with that. 

I took him into a therapy room where we waited for Ms. Jen. I got my computer set up and Theo got very excited to see Ms. Jeannine pop up! Theo gave Ms. Jen a huge smile when she walked in, so I knew we were good! Theo really loves all of his therapist, but he doesn't do well with change and I was worried he wouldn't understand why he wasn't going on the swing with Ms. Laura even though we were in her clinic. But he did! And our session with Ms. Jen and Ms. Jeannine was great!

[Theo showing off his tambourine skills]

We are going to try giving Theo puffs again and mix up his pouch foods. Ms. Jeannine also suggested giving him some of the pouch foods through his g-tube. We want his GI system to tolerate all kinds of foods, not just his Kate Farms.

Theo had seven observable seizures today.

Thursday, January 18th:

Theo headed off to school, the contractor worked on the bathroom, and Josh and I ran errands.

After school we took Theo to Thrive and this time he saw and played with Ms. Laura. He was very happy to go on the swing!

The contractor put in the pocket door frames and cement board in the shower.

[Cement board to keep the shower area waterproof]

Theo had 11 observable seizures today.

Friday, January 19th:

The weather in the midwest is a little crazy. After our deep freeze it warmed up into the 20s for a few days, but then on Friday we got some snow followed by another plunge. At least this deep freeze is only -15 for a few days. But then we get back into the 30s and it's going to rain?!

Like yesterday, Theo went to school and the contractor got a lot of work done. They were able to get the drywall up and it's really starting to look like a bathroom!

After school we took Theo to PT with Ms. Cody. While he was there we went to UPS to trade in Josh's old iPhone (he got a new one with a better camera for Iceland). We then went to the new bakery, Making Sweet Memories. They bought out the Cookie Jar Bakery where we use to get buckeyes. We were very happy to see that they bought Cookie Jar's recipes, so they had the delicious buckeyes! We got a few of them along with a couple other cookies. I hope they are successful!

Theo had 12 observable seizures today.

Weekend:

We stayed home all weekend since it was -15 outside. The "tape and mud" guys were working on the bathroom all day Saturday. 

Theo and "Cow" have been friends for a long time. They were just reintroduced and Theo is very happy!

[February 2018]

He still likes Cow on his cheek! It's so cute!

[Progress with the tape and mud]

On Saturday night we watched the Packers play the 49ers. San Francisco was the heavy favorite, but the score was back and forth all game! 

[AD is a Packers fan!]

Unfortunately, the Packers lost it right at the end with a late interception. They have a pretty great team, so I'm sure they'll be back in the Playoffs again next year!

[Super strong Theo!]