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!
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?!
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.
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!
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