Back to Our New Normal

Tuesday, April 11th:

I guess it's time to get back to our new normal! Josh went back to work this week, Theo went back to school and therapy, and I continued my triathlon training.

[The Playoffs and Play-In Tournament are set!]

Theo was SOOO excited to go back to school!

And Josh was looking super handsome as he headed off to work!

After the boys left I headed downstairs to work out. A few hours later I got a message from the school letting me know that Theo was complaining, so they took his AFO's, SMOs, and shoes off for a little while. I told them that since we were not able to put Theo's braces on while he was in the hospital (he had IVs in his lower legs), it will probably take some time to get use to them again. Theo also has a small blister on his big toe from his pulse ox. His skin is so sensitive!

[They had PE outside and Theo "ran" the bases]

[Poor little toe]

The Lakers beat the the Timberwolves in the Play-In, so we will take on the Grizzlies in the first round.

Theo had six observable seizures today.

Wednesday, April 12th:

Theo had another great day at school! It seems like he is back to his baseline. 

Theo had five observable seizures today.

Thursday, April 13th:

After I put Theo on the bus I headed to the local club so swim laps. I was a little rusty, but did pretty well!

[I guess that's quite an accomplishment 🤷‍♀️]

I usually pick Theo up from school on Thursday's so I can take him to OT, but Ms. Laura was just getting over a sickness and she didn't want to risk Theo getting sick. We really appreciate that!

Theo had five observable seizures today.

Friday, April 14th:

Theo went to school and then after school I took him to PT. We had beautiful weather all week and I didn't have time to buy Theo new shorts, so he had to wear the ones from last year. I think it's so cute how short they are! Gotta show off those legs!

Theo had four observable seizure today.

The Weekend:

Josh had to work on Saturday, so Theo and I worked hard at home.

We got this new cart for Theo's new medical equipment: High-frequency chest wall oscillation system (aka "The Vest" aka "the shake vest"), cough assist, suction machine, and nebulizer.

Theo played in his chair for about 90 minutes and he was happy the entire time!

That afternoon he went in his Gazelle stander for about an hour, but then he needed a two hour recovery nap. 

[The shake vest and nebulizer twice a day]

Josh is going to be Chief on a job in Elmhurst, but it hasn't started yet. To hold him over he's been hired as a Welding Inspector on a job in Crawford. Gotta put that CWI to good use!

After Josh got home we drove my bike route for my triathlon. I'm going to go out and ride some of it on Tuesday when the weather is nice.

On Sunday I had a long workout which consisted of a 2.5 hour bike ride and a 100 minute run.

I've discovered some really good gels and drinks that have been helping a lot during these long runs.

I did part 3 and 4 of the Boston Marathon running series with Tommy Rivs! It was a lot of fun!

Hey look! We are consuming the same gels!

Good luck to Rivs and everyone else who are running the 2024 Boston Marathon tomorrow! #BostonStrong!

After my super long workout we watched the Lakers beat Memphis in Game 1 of the Series! WOOT!

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

AND BIG NEWS! We were able to reschedule Theo's VNS surgery for May 2nd. I've been sending emails, calling doctors and nurses, and trying to get everything in order for it to happen. Theo will have a chest CT scan next week and then we will do a video visit with Pulmonology the following week. She will clear him for surgery and then I'll take Theo to get a physical at the Pediatrician and bloodwork at the hospital. It's a tight turnaround and everything needs to go according to plan, but we are going to make it work!