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! 🥶🥶

Update on Projects: US Access Board, Sami's Law, and VOGM Walk

US ACCESS BOARD:

The US Access Board meets only a few times a year and Changing Spaces really wanted to get "Adult Changing Tables" on their agenda. So, we started a letter writing campaign!

Here's some info about who the US Access Board is and what they do:

If we can get the US Access Board to rule that adult-sized changing stations should be put unto public restrooms, it would become a mandated accessibility feature under federal guidelines (like ramps, elevators, and accessible restrooms). That would be HUGE!

We posted all over social media and we got so many people to send in letters that the US Access Board responded!

They told us that our request wasn't successful for the October meeting. HOWEVER, they will take our input into consideration and they will discuss changing tables at their next closed meeting. I want to thank everyone who sent in letters! We really appreciate your help!

TRAVEL:

The Chicago Mayor's Office and the CDA announced a new improvement project (#ElevateT3) for O’Hare Terminal 3 in April. "This project will upgrade passenger amenities, improve security screening and airport operations, and expand accessibility for passengers with disabilities at Terminal 3."

I reached out to the ADA Coordinator who oversees O'Hare and Midway to see if they had plans to include a family restroom with a powered, height-adjustable, adult/universal changing table. O'Hare already has a great "Changing Places" restroom in Terminal 1, but they need at least one in each terminal! I'll keep you posted if I hear back from them!

SAMI'S LAW:

IDOT is working on installing adult changing station in a few of their highway rest stops. All of these locations are far to the south. There are two DOT rest areas that are currently closed for refurbishment between us and Peoria (where Theo's hospital and doctors are), but those two places aren't on their list. That's a bummer, but I'm glad they are moving forward with getting some adult changing tables installed.

VOGM Walk Your Way:

The Vein of Galen Malformation Support Network and VOGM.org had their Fifth Annual Walk Your Way Walkathon!

I asked our "PEOPLE FOR THEO" friends and family to print off the race day bib, take a picture, and post that picture on social media (between October 21st and 29th) using the following tags:

#peoplefortheo

#vogm

#vogmwalkyourway

#veinofgalen

#vogmawareness

#AVMAwareness

#veinofgalenmalformation

#veinofgalenaneurysm

We had a lot of people participate by donating and/or posting pictures of them walking for Theo.

All money raised will go to help these amazing VOGM warriors!

Donations from:

Emily Ward & Kids

Jody & Rich Heaton

Tylyn & John Neilson

Karen Turk

Karen Stearns

Mom & Dad

Missy & Tyson & Kids

Thank you so much to everyone for posting pictures and for your very generous donations! I really do appreciate the love and support!