Theo ER Supermoon Visit

Monday, November 11th:

Thank you to all the Veterans out there! We appreciate your service!

[Donald Neilson (my dad's dad) aka Papa the Great]

Theo had a great day at school! According to Ms. Jess, "Theo did an amazing job in lightbox today. He got 8/8 perfect on identifying the color blue from a field of two colors!" He did such a great job that he earned games on his iPad! That's my boy!

Theo had four observable seizures today including ones that were 80, 82, and 74 seconds long.

Tuesday, November 12th:

School started a bit different today. During their morning meeting Ms. Jess asked Theo if he was going to make good choices and he said "no." And it sounds like he stuck to that answer because he did NOT earn iPad privileges at school. At least he's honest, right?!

When Theo's Epidiolex was delivered last Friday, they forgot to send an adapter for Theo's g-tube. We had to improvise over the weekend, but it's a lot easier to give Theo his meds now.

I picked Theo up early from school, so we could go see Cole at CPO. It's time for Theo to get new AFOs and SMOs. We also asked Cole to put a hole in Theo's vest for his g-tube. 

After CPO we went to PT with Ms. Cody and then to The Legacy Ranch to see Sherman!

Theo had four observable seizures today.

Wednesday, November 13th:

Last week I mentioned that Theo is having issues dealing with the volume of his food and medications, so I thought I would show you what his morning meds look like:

Liquid meds are put in syringes, powder is put in a small container, and pills are put in the mortar for crushing.

Crush the pills and add them to the other powder meds. Add water and mix well.

See what I mean? That's a lot of volume for first thing in the morning.

And he's supposed to get four ounces of formula right after all his meds are given. It's just too much, so we are going to help this by giving him an overnight feed, so his morning formula dose will decrease.

After school Theo and I had a Zoom with Ms. Jen and Ms. Jeannine. We went over Theo's new feeding schedule. They agree that the overnight feed will help Theo with his volume issues. And hopefully consuming more of his calories at night will help Theo to be more hungry during the day, so he'll want to eat orally. Ms. Jeannine also suggested trying a different formula. We are going to try the new pump schedule for a week and if that goes well we can mix up the formula.

Theo had five observable seizures today including one that was 120 seconds long.

Thursday, November 14th:

Theo had another great day at school and I got a lot done at home.

After school I took Theo to see Ms. Laura at OT. Theo was very excited to see her, but was very stubborn when Ms. Laura was trying to get him to do his final activity before swing time.

Theo had five observable seizures today.

Friday, November 15th:

After I got Theo on the bus I headed into the basement to get some work done. It's a bit chilly down there, but I do love those dual monitors!

At 11:42 AM, Ms. Jess sent me this sweet picture of Theo sleeping. But then at 12:17 PM I received a call from the school. Theo was having a cluster of seizures and at the three minute mark they gave him a dose of his emergency meds. Unlike last time, Theo came out of the seizure when he got the emergency meds. The paramedics evaluated Theo and decided to take him to the ER.  

When I arrived Theo was in the room with Ms. Jess. He has his music and his ball, but he was tired from the emergency meds.

Ms. Jess filled me in on everything and then the ER doctor came in. We chatted for a little bit and then she said she would call Theo's Epilepsy Specialists to see what she wanted to do. After she left, Ms. Kate (Theo's teacher) showed up with Theo's wheelchair and all of his stuff. Theo attends a great school with some truly amazing people! 

An hour after I arrived Josh showed up. He brought lunch (I was starving!) and then played peek-a-boo barn with Theo.

Theo's doctor ordered some bloodwork, but no x-rays, CT's, or IV's so that was good news. After we got the bloodwork results (everything looked good), the ER doctor told us the plan: go home, give Theo a bridge this weekend, continue the Epidiolex increase and the valproic acid decrease, and rest.

We were discharged at 4:15 PM. On our way home I noticed that the moon was HUGE! It was a Supermooon! I don't think it has anything to do with Theo's seizures (last time he was in the ER it was a waxing crescent with 3% illumination), but I know some people will find that interesting.

Weekend:

Josh went to work on Saturday to make sure their HDD got pulled. And it did! YAY!

Thank you to this sweet family for sharing their story! Watch the video here.

We started our new feeding pump schedule on Friday. Theo did well and we had no issues with the overnight feed.

[This guy and his records!]

Speaking of sports, The Lakers are on a five game winning streak and the Packers  beat the Bears on Sunday AND the Chargers beat the Bengals in a nail biter! 

BUT my alma mater lost their first game of the season. BYU is now 9-1 and they'll drop a bit in the ratings (they were #6), but they'll win the next two!

On Sunday I went to see Elf Jr. The Musical at the local High School with Ms. Laura. It was put on by the middle school and they did a fantastic job!

It even snowed at the end! Too cute!

Tokyo Disney Vacation Package Midnight Battle!

Monday, November 4th:

Theo had a long four day weekend due to the election, so we had an easy day at home. That afternoon we went to see Ms. Laura for OT. 

[Look at this beautiful pumpkin they painted!]

We got a letter in the mail from Cigna letting us know that after the peer-to-peer with Theo's Epilepsy Specialist, Dr. Garcia Pierce, they have approved his Epidiolex. YAY! It is a controlled substance that has to be made in a speciality pharmacy, so we will be getting it from one of Cigna's speciality pharmacies. I'm excited to try this new med and to get Theo off of the Valproic Acid and Levocarnitine. We will wean him off of the Valproic Acid as we increase the Epidiolex over the next 6 weeks.

As I was watering our Golden Gate Ficus bonsai tree I notice tiny bugs crawling around in the dirt. 

Apparently you can kill them with a dish soap and water solution.

I made the solution and then sprayed the bonsai tree. I checked the soil over the next few days and didn't see any movement so hopefully it worked and I didn't kill the tree!

Tuesday, November 5th:

Happy Election Day! I hope everyone voted!

Theo didn't have school today, so I took him with me to run a few errands. He was VERY suspicious when I was getting my allergy shots. I'm sure he was just looking out for me 🤣

That afternoon we went to see Ms. Cody and Ms. Becca at PT and the to see Sherman!

That night I stayed up late to watch the election AND, more importantly, to get our Tokyo Disney Vacation Packages. They went on sale at midnight and their system is insanely slow. I prepared ahead of time and had three computers going. I got in the system at 12:20 AM and the packages we wanted were all sold out, but I still managed to book a three day vacation package, which gives us three days in the parks, two nights at MiraCosta, and a bunch of other perks. All the triple bed rooms were taken too, so I booked a Tuscany Side Capitano Mickey Superior Room that has two beds and a trundle bed. As long as my brothers don't step on me in the middle of the night I will be perfectly happy! I really wanted two more nights at another Disney hotel, but I'll have to book that when the rooms go on sale at the end of December. Wish me luck!

Wednesday, November 6th:

Today Theo, Josh, and I headed to Peoria to see Eric at Numotion, so Theo could get measured for his molded wheelchair seat cushions. They put him on these beanbags and then as a vacuum sucked the air out, Eric was able to mold it to fit Theo. It was super cool! He still has the head tilt, but look how straight his body will be while he's sitting in his new wheelchair! 

After Theo went to bed I had my first official business meeting with my new company. We chatted for a few hours and we all left the meeting feeling good about our decisions.

Thursday, November 7th:

Today Theo and I drove to Peoria to see the GI Specialist, Dr. Ullah. We talked about Theo’s weight (57.4 lbs) and height (50”) and how he hasn’t changed in about two years. Dr. Ullah said that he was happy with Theo’s weight because he should be in the 50% percentile, which is where they want most wheelchair users. Theo is currently in the 85%, so he can continue to plateau. We then talked about Theo’s volume issues and how he would benefit from an overnight feed, so he isn’t getting so much volume during the day. The pump can also be used to give Theo extra fluids when he is sick. Dr. Ullah agreed and we were approved for an overnight feed with the feeding pump.

[Theo was happy to stretch out on the exam table, but he was still very suspicious]

After we got home I received a call from Theo's supplier and we made sure everyone was on the same page when it comes to the new changes. 

Friday, November 8th:

Today Theo went to school! He was so happy to see all of his friends!

While Theo was at school I had a Zoom with my new friend, Jessica. She is an OT who will be presenting at the IAPD/IPRA Soaring to New Heights Conference next year. She is gathering information about accessibility in the community. This conference is the largest state park and recreation conference in the nation, so she has the potential to reach a lot of people with her message. The conference is in January in Chicago and I am going to try to go. I'd like to support my new friend and maybe I can do some networking for Changing Spaces while I am there too!

During our Zoom chat we talked about the lack of accessible places around our community, especially powered, height adjustable, adult/universal changing tables. We also talked about home modifications. I took her on a tour of our home, so she could see all the work we have done to make out home accessible for Theo.

That afternoon we took Theo to PT with Ms. Cody and Ms. Becca.

Years ago we gave Ms. Becca Theo's old tryke so she could try to donate it back and we could get a new one. Luckily, we were able to get Theo a new one, so we are going to donate the little one to Grundy Area AMBUCS. Hopefully it will got to another special kid who will love it!

After PT we took Theo to get his COVID and flu vaccine shots and that night we gave him his first dose of Epidiolex. 

Weekend:

We sold one of our Orlando vacation rentals! We are going to keep the condo, but we are still looking to sell the six bedroom house. Are you interested?!

[Theo's monthly medical supplies - yes, monthly]

I bought this cool converter for our trip to Asia. It's also a voltage converter which is much needed in Shanghai and Hong Kong. 

[All my electronics]

[Fancy!]

How cool would this be?! There are so many people who want to (or need to) travel and being able to stay in their wheelchair is a game changer!

This is Halloweenn

Monday, October 28th:

I sent Theo off to school and then headed to my eye doctor appointment. I don't remember the last time I went to the eye doctor, but my PCP said I should get them checked just in case they are the cause of my migraines.

The technician had me sit at a bunch of fancy machines which I assumed took pictures of different parts of my eyes. The doctor then came in and asked me why I was there. I told him I was getting migraines more frequently and my PCP thought it could be my eyes. He then pulled up all the pictures and went through all of them. He said he didn't see any concerns! He then brought over the Phoropter (which I recognize) and had me look at a screen across the room. He made the letter different sizes and asked me if they were blurry and if I could read them. He made the letters super tiny and was impressed that I could read them. He then switched back and forth between a few prescriptions and asked me which one looked clearer. Sometimes I couldn't tell. He then got out a bright red light and asked me where it was. After a few more test he concluded that I have great eyes and they are not the cause of my migraines. He asked me if I have any troubles driving at night. I told him that if I'm a little tired the lights from other cars flare and bother me. He said he could prescribe me a small prescription for that, but he didn't think it was necessary. So, yay! No eye problems here!

Theo had a great day at school!

After Theo got home I took him to OT with Ms. Laura.

Tuesday, October 29th:

Theo went to school, Josh went to work up by the airport, and I worked in the basement. After school I took Theo to PT with Ms. Cody and then we went and saw Sherman (and friends) at The Legacy Ranch.

Sherman was dressed up for Halloween!

Kaylin took away one of Theo's cushion's and encouraged him to lift his head up and use his arms. He did great! 

Wednesday, October 30th:

Theo lost his second tooth this morning! I noticed a tiny bit of blood while I was brushing his teeth. I couldn't find the baby tooth though.

After school Theo and I zoomed with Ms. Jen and Ms. Jeannine. Theo was being VERY protective of his mouth. He lost a tooth, threw up muiltiple times a day for over a week while he was sick, was struggling with acid reflux, and was very gaggy from his post-nasal drip. This poor kid can't catch a break.

That night the Dodgers won the World Series! YAY! 

My dad grew up in LA, so he is a big Dodgers fan. I'm more of an Angels fan, but I root for both since they are in different leagues 😁

Thursday, October 31st: HALLOWEEN!

Happy Halloween from our Mandrake!

[I'm pretty sure he's rolling his eyes]

[Classic!]

I sent these instructions to Theo's school:

At school they went trick-or-treating and Theo came home with a lot of candy!

Ms. Jess and the rest of the aid dressed up as Jack Hartmann, who is a famous kid song singer on YouTube. Apparently Theo's class LOVES him!

[Little kid Jack Hartmann!]

Theo had an early out day, so he got home early and went down for a nap before we went to see Ms. Laura.

We got home at 3:30 PM and I finished getting everything ready for the trick-or-treaters! Last year we had over 250 kids and that was during a snow storm, so I was sure we would have more kids this year. I was prepared with four baskets of candy and some glow sticks for kids with allergies. 

I kept track of how many kids came by and I was shocked that our numbers were still pretty low at 5:00 PM. I had the front door open so I could see when the kids were coming, but I noticed that kids would start coming towards our house and then they would start running somewhere else! This happened over and over again! What was going on?! Finally a couple of older girls came to our house and they were holding walking tacos. They said our neighbors were passing them out! So the kids were skipping our house and heading straight for the good food. UGH! I guess next year we are going to get a cotton candy machine or something!

We ended the night with only 150 kids stopping by. I was left with two baskets full of candy. Luckily, a lady down the street posted in the local mom's FB page that she was collecting candy to donate to the troops. I put the candy in bags and made plans to drop it off first thing in the morning!

Friday, November 1st:

Today I signed a contract to become a minority owner in another small business. I can't say much about it right now, but I am excited!

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

Weekend:

We spent the weekend relaxing, watching sports, and working on new adventures!

When do you put up your Christmas decorations? I still have my fall decor up, so I usually wait until it gets a little colder - maybe the middle of November?

[How wild is this?!]

Josh got some new clothes for Alaska! They are rated to -60, so I think he'll be warm enough! 🥶🥶