Our New Job by the Airport

Monday, September 16th:

Even though Theo was feeling better I decided to keep him home on Monday, so we could continue with his respiratory therapy.

Josh started his new job today. It's up by the O'Hare airport. I will join him (remotely) on that project next week after I wrap up the paperwork on the Lexington job.

Theo had 10 observable seizures today.

Tuesday, September 17th:

Theo headed off to school, Josh went to work, and I worked in the basement all morning. Theo was pretty tired when he got home from school, but he did great at PT! On our way to Sherman's house he got really tired and took a power nap. 

[Napping while he was waiting for Sherman]

[Partial lunar eclipse of the Supermoon!]

Theo had seven observable seizures today.

Wednesday, September 18th:

I sent Theo off to school but a few hours later I got a call from nurse Brad. He said that Theo was in his stander and got really pale. His pulse was a little high and his oxygen level was 95. Of course, they got him out of the stander immediately and laid him down. We all had flashbacks of when Theo fainted in 2022, so we decided that I should go get Theo and take him home. When I got to the school I spoke to Ms. Kate, Nurse Brad, and Ms. Jess. Theo had his TLSO vest on while he was in the stander. In order for his vest to work properly it needs to be tight, but Theo is still recovering from a cold, so it wasn't the best idea to put his vest on. We decided that until Theo was fully recovered from his cough we will not be using his vest.

I took Theo home and did some more respiratory therapy with him.

[Trying to use his ball to block the nebulizer]

Theo's numbers looked good, so I put him down for a nap. 

After his nap we had a Zoom with Ms. Jen and Ms. Jeannine. Theo was very excited when they popped up on the computer!

I continued to monitor Theo's stats all day and his numbers were great!

Theo had five observable seizures today.

Thursday, September 19th:

Hey! Look who showed up on my Ring camera at the condo! My dad! 

My dad likes to go down to Orlando every few months to check on the properties. I asked him to take a few pictures of the hallway for me, so I could post them on Airbnb. Thanks dad!

Theo had a great day at school and Josh had a long day at work!

Theo had ten observable seizures today.

Friday, September 20th:

Theo was still feeling good so I sent him to school today. Ms. Jess said he had a great day and it seems like his cough is pretty much gone. After school he went swimming with Ms. Cody for PT.

Remember when we went to Numotion last month for the wheelchair clinic? And they picked out an awesome wheelchair for Theo? Remember how our insurance has only ever paid for one piece of equipment (Theo's Convaid Cruiser) even though we've applied for others (stander, gait trainer, activity chair, bath chair, etc)? Well, today I got a call from Numotion and they told me that our insurance has agreed to paid for Theo's new wheelchair! I was blown away! I asked her if she was sure she had the right file in front of her. She said she did! My happiness was short lived because we were just informed that Josh's work will be switching to a new insurance company starting October 1st. You have got to be kidding me! We've been with BCBS for YEARS. The timing is just really bad. The Numotion lady said that they would have to submit everything to the new insurance company next month and start the process over again. Ugh. As a family we literally use our insurance daily. I know it's not the norm, but it's a huge inconvenience to switch. Theo may not end up getting this much needed wheelchair and this new insurance company may not want to pay for Theo's private therapies anymore and we can't afford $1600/week to pay out of pocket. I know BCBS could be a pain by not paying for equipment for Theo, but we ended up buying most of his equipment second hand. And we never had to fight BCBS about paying for all of Theo's hospital stays or his private therapies.

I hope this all works out. Wish us luck 🤞🏻🤞🏻

Theo had 9 observable seizures today.

Weekend:

On Saturday morning Theo and I went to the clinic to get his bloodwork done. We had a great nurse and she was able to get him done with just one poke! Theo was still not happy about it, but he did great too!

[More respiratory therapy]

I added in another printer and another desk to create the ultimate super mega desk! I have to move all the files into binders, so having extra desk space will be helpful!

Speaking of work... Our job by the airport should be wrapping up in EARLY November and the told Josh that there is "a ton" of work in the area next year, BUT it won't be starting until the END of April. Bummer. We can't go six months without work. It would cut too much into our savings. Josh has been talking to his friend, Lucas, about work in Alaska that would be starting in January. IN JANUARY! IN ALASKA! ON THE NORTH SLOPE!

Lucas was able to recruit six guys for the job and Josh knows all of them. During the job they will be at a "man camp," so all of their housing and food will be provided for them. They will work 12 hour days, seven days a week. They can either work three weeks on, three weeks off; six weeks on, two weeks off; or eight weeks on, two weeks off. The company will get them from Anchorage to the North Slope, but we would need to fly Josh to Anchorage. When they arrive on the North Slope it will still be Polar Night, so that's pretty crazy! We experienced midnight sun while we were in Antarctica, so this will be pretty wild for him. It's not set in stone, but it is nice to have a few options for work.

In Alaska the pipeline are built above the ground and most of the work in done in the winter because the ground is frozen and safe to work on.

I am so grateful for Josh and his willingness to go to the ends of the earth to provide for his family! And I appreciate my parents volunteering to come up and help me with Theo for a couple weeks while Josh is gone. I really appreciate the support! I'll keep you all posted on what we decide!