Christkindlmarket

My friend, Kenny, passed away peacefully at the hospital. Emily was able to be with him at the end. Over the last few days he was awake and able to communicate with Emily. She made sure he knew they all loved him so much and that they would be okay. 

I'll never forget the first time I met Kenny. I was living in Cedar City and down in Vegas visiting Katey and Emily. Kenny was pursuing Emily and he was coming over to their place for a visit. I was standing in their living room when Kenny came over. I remember this huge guy coming in the front door and making a bee line right to me. I said hi and he responded with a giant bear hug! I could hear Emily panic a bit as she said, "Oh! Courtney doesn't really do hugs!" Kenny continued the hug and as he pulled away told me that he needed me to like him. He felt like he needed my approval so Emily would date him. In all honesty it wasn't hard to give Kenny my stamp of approval. He was genuinely kind and caring. He had the best dance moves and a fantastic (albeit kinda dirty) sense of humor! He made it his mission to make sure I was comfortable (by being uncomfortable) and always felt welcome in Vegas with their group of friends. [I don't know if you know this about me, but I don't have a lot of friends] He wanted to help me break out of my bubble. He would sit very close to me or stand very close to me when we talked. He always made me feel safe and I'll always love him for that.

Rest in peace, my friend. Don't worry, we'll take good care of your family. They are so loved.

[Emily and Kenny]

[Kenny and Emily dancing at our wedding]

[Kason, Kenny, and Emily at their wedding]

[Kenny and Emily at Katey and Paul's wedding]

[Goobers]

[Such a beautiful family!]

Kenny's Obituary

Family GoFundMe

I'll be flying out to Utah next week for the funeral.

Monday, December 4th:

Theo and I went to Peoria to see one of our favorite doctors, Dr. Steve with Ophthalmology. He checked Theo's eyes and determined that Theo's prescription was good for now. He was also happy to report that Theo's eyes were responding symmetrically, which means he sees the same out of both eyes. Theo's left eye does still wander a bit, but he isn't too worried about that. Dr. Steve said that he can fix it, but it's not a priority right now. We will see him again in June for a dilated visit.

Theo had three observable seizures today.

Tuesday, December 5th:

After I put Theo on the bus, I went and finished my strength training series. It's a 12 week program with 3-4 workouts a week. It's tough, but this is the second time I've gone through it and I can tell how much stronger I am. I was able to lose fat while gaining muscle. I'm going to do a round of PiYo next which will help me maintain my muscles and then I'll figure out what strength training I want to do next!

[Finally the Village sent guys over to trim our trees]

Josh went back to the dentist to have a chipped tooth fixed and Theo had a great day at school. A lady came and evaluated Theo for a speech device. After the evaluation Theo's speech therapist called me to tell me how he did. She was so excited to report that Theo cooperated AND was able to show off a bit with the devices. They tried a visual device, but Theo didn't like it. He did really well with the buttons and choices on the iPad. She said that the lady will come back two more times and they will try the visual device again.

After school I took Theo to High Hopes for PT/OT. Theo didn't have horseback riding lessons today since it's the end of his 8 week session. We signed up for another 8 weeks, so we'll see Sherman again next week!

Theo had eight observable seizures today.

Wednesday, December 6th:

Theo went to school and Josh headed to work. Josh's job is wrapping up and they are getting ready for a few more tricky tie-ins that will happen next week.

After school Ms. Jen came over for feeding therapy. Theo is being stubborn again and doesn't want to eat anything. It's a battle, but we'll get there.

Sara sent Josh a couple pictures of her and Brodee! It sounds like they are doing well in Kingman.

Theo had six observable seizures today.

Thursday, December 7th:

Theo went to school and then I took him to OT with Ms. Laura. He usually works hard for Ms. Laura because he knows he gets to go on the swing at the end of their session!

After OT, Josh, Theo, and I went up to the Christkindlmarket in Aurora. We usually go to the market in Ottawa, but my favorite hot chocolate place (Bob's Belgian) was going to be in Aurora this year, so we decided to try that market out. By the time we got to Aurora it was dark, but that just made the market more magical!

It was fun to walk around, check out the booths, and get some delicious food! We got raclette, hot chocolate, and frites with mayo (just like Belgium). Theo slept through most of it, but Josh and I had fun!

After exploring the market and getting our delicious food, we headed home to watch the Lakers take on the Pelicans.

We won, so we are going to the Championship of the first NBA In-Season Tournament!

Theo had five observable seizures today.

Friday, December 8th:

Theo had another great day at school! The speech evaluator came back and they tried using the visual device again. They said Theo did fantastic and they are going to look into getting a device for him to use in the classroom!

After school I took Theo to PT with Ms. Cody. 

Theo had six observable seizures today.

Today is also my dad's 65th birthday! My mom threw him a party in CA and it looked like they had a great time! Happy birthday dad!

Weekend:

I caught Theo's cold over Thanksgiving, but it didn't last long. I had a small cough and a runny nose for just a few days. The following week I started to get really bad sinus and ear pressure. I can usually take meds, use a heating pad, and do facial massages and it will go away, but this time the pressure got worse. I finally caved and saw the doctor on Saturday. Turns out I have an ear infection. Hopefully the meds will help clear it up before I fly out to Utah next week.

This giant iceberg, A23A, is 1500 square miles and broke off of the same area as A57A, the iceberg we saw in Antarctica back in 2018! A57A was only 55 square miles and we thought it was HUGE! 

On Saturday, we watched the Lakers beat the Pacers in the first In-Season Tournament! LeBron James was named MVP and it was a fantastic game!

  Now we'll see if the Lakers can hold it together through the rest of the season!

Seeing Sherman TWICE!

My amazing friend Kenny is currently in the ICU on a ventilator fighting for his life. I love this family so much (you probably recognize his wife, Emily, is one of my best friends). They need your thoughts, prayers, and good vibes. Donations are always welcome too.

https://gofund.me/9fe78d0f

Monday, November 27th:

After I sent Theo off to school and worked out, I went shopping for Theo's Christmas gifts. Every year we give all of Theo's teachers, therapist, bus drivers, and classmates gifts. This year we have gift cards, cocoa tubes, and plenty of candy! Theo will pass them out to everyone the week before Christmas.

When Theo got off the bus I noticed he was wearing someone else's beanie. I guess Theo and one of his classmates both threw off their beanies and someone found this one and assumed it was Theo's. I don't blame them! It's super cute AND Star Wars! 

Theo had a great day at school, but he definitely needed a nap when he got home.

I only get to watch a few Lakers games a year, so imagine my disappointment when I finally get to watch a game and this happens:

Theo had two observable seizures today.

Tuesday, November 28th: 

It was COLD this morning! I had to bundle Theo in his Antarctica blanket before putting him on the bus. 

After school I took Theo to PT/OT and then to The Legacy Ranch to see Sherman!

At the end of their lessons Sherman likes to come over and say goodbye to Theo. This time Theo was very interested in petting him. Maybe he'll let Sherman give him a kiss next time!

Theo had nine observable seizures today.

Wednesday, November 29th:

Theo missed his lessons with Sherman last week because he was sick. Since Theo had an early out today, we were able to reschedule his lesson for today!

After we saw Sherman Theo had feeding/speech at home with Ms. Jen and his dietitian, Ms. Jeannine, joined us via Zoom. 

That night we changed Theo's g-tube. He has a small sore that has been giving us grief. We are trying to keep the area clean and hopefully the new tube with help too.

Theo had four observable seizures today.

Thursday, November 30th:

Theo headed off to school and Josh went to work. I got an email from Make A Wish letting us know that they can not gift us a Swim Spa. And that's perfectly fine. We appreciate them selecting Theo, so we are going back to the drawing board. 

After school I took Theo to OT and Josh went to the dentist. He has one cavity, so they are going to fill it next week.

Fun art from Theo that is going up on the wall:

Theo had four observable seizures today.

Friday, December 1st:

Josh had a rain out at work, so we decided to run a few errands. First stop: REI! I traded in my boots for a larger size (they are just a tad too tight) and we got some new gloves. Then we swung by Costco and Home Depot where we got these adorable Christmas pots!

Josh then took Theo to PT while I went and saw the new Disney movie, Wish. It was sooooo good and I cried so much. I've been feeling a lot of strong emotions this week. Watching from a distance as my best friend goes through one of the most awful experiences is heart wrenching. I just love that family so much and I wish I knew how to help more.

Theo had nine observable seizures today.

Weekend:

It rained over the weekend and Josh had to work on Saturday, so we didn't go anywhere.

I was able to participate in a giving extravaganza this week that was coordinated by Sharon McMahon on IG. We were able to raise money for a family that lost their house in a fire and for a family that was trying to buy a wheelchair accessible van for their child. We were also able to raise over $600,000 to help relieve medical debt through RIP Medical, which will erase 60 MILLION dollars in medial debt. I just love this time of year! It seems the Christmas Spirit encourages people to be more giving and kind.

Thanksgiving and Christmas Decorations

Monday, November 20th:

Josh and I got up early, grabbed some breakfast at the hotel, and then made the long drive home from Appleton. I don't think Theo even noticed that we were gone. He was busy having way too much fun with Ms. Jess!

That afternoon we had a Zoom with Theo's school speech therapist, his teachers, and a lady who is going to be evaluating Theo to see what speech device will work for him. We had a good conversation and everyone is excited to see what she brings for Theo to tryout in a couple of weeks.

Theo didn't have school this week, but he got sick, so we had to cancel all his therapies. Bummer.

Theo had 12 observable seizures today.

Tuesday, November 21st:

Theo stayed home with me all day. Since he was coughing I did his respiratory therapy every four hours and had to use the suction machine a couple times (he hates that thing!). 

During Theo's nap I jumped on Zoom and had a parent/teacher conference with Theo's teacher and all of his school therapist. It was so nice to talk with them about Theo. They were all very excited about how much more awake and alert he is since we weaned him off the Clobazam. They are expecting big things from him!

[Shake vest and nebulizer]

After Josh got home I went and got my allergy shots and then went to Cracker Barrel to get our Thanksgiving food.

Theo had three observable seizures today.

Wednesday, November 22nd:

Josh had to work every day this week except Thanksgiving, so Theo and I just hung out at home. I caught Theo's cold... bummer.

I talked to Luke and we decided it would be best for us to do two days at each of the Disney Parks in Tokyo. I have our plans on an excel spreadsheet, but I made this post-it calendar to help me figure out how to shift our plans around. We were originally going to do one day in Toyko, three days at Star Wars Celebration, two more days in Toyko, and then two days at Disney.

Original Plan:

Now we are going to go two days earlier and do all the Tokyo days at the beginning of the trip. 

New Plan:

I think it's going to work out great! I can't wait!

Theo had 10 observable seizures today.

Thursday, November 23rd:

Happy Thanksgiving!

We got turkey breast, mashed potatoes, gravy, and a cinnamon roll cake from Cracker Barrel. Since it's just the two of us, it works out perfectly!

After Thanksgiving lunch we put up our Christmas decorations (it's supposed to snow this weekend). 

[Tiny tree in the family room]

[Large tree by the window with the start of our Harry Potter Hogsmeade display]

[Three Broomsticks and Harry]

[Outside]

[I love how you can see the tree through the window!]

Theo had three observable seizures today.

Friday, November 24th:

Josh had to go back to work today. We are grateful he has a job, so I'm not going to complain... too much. He also works a lot at night after Theo goes to bed too. We are very thankful for him!

My brother Luke shaved his head. I showed the picture to Josh and he approved!

Theo had three observable seizures today.

Weekend:

I was super sick on Saturday (hopefully that was the peak of this cold), but we got snow on Sunday. YAY! It's so pretty!

Theo's hair is getting too long and is starting to tangle in the back. Josh got out his clippers and Theo looks so handsome!

Theo had three observable seizures on Saturday and three on Sunday.

Besides Theo and I getting colds, we had a nice Thanksgiving at home. I am very thankful for my family and friends!