Here I am: AFO Fitting, FaceTime with Em and Katey, Rolling Over, and Rage For Rivs

Sunday, July 26, 2020

AFO Fitting, FaceTime with Em and Katey, Rolling Over, and Rage For Rivs

The second half of July wasn't as busy as the first, but we did have a lot of therapy to keep us busy!

[When will the madness end?!]

[Theo working hard with his buttons and toys]

[Star Wars helps keep me sane]

On July 15 we had Tornado Watches and multiple funnel clouds were spotted over Ottawa. Everyone was fine though!

We decided to mix it up and Theo has been standing at the dinner table. If we are going to get in multiple sessions in the Stander a day then he may as well stand at dinner. His feeding therapist also recommended "mixing it up" when it comes to food. Two birds, right?

July 17th was Disneyland's 65th Anniversary! I still remember celebrating the 50th, aka "The Happiest Homecoming on Earth" back in 2005. How was that 15 years ago?!

On July 17, Theo and I went to Hanger to get him fitted for his AFO's and SMO's. We have been waiting so long for these! Theo sat like a champ and let the nice man take all of his measurements. They also casted his legs and Theo had no problem with that either. I think it helps that the technician was singing along to Theo's music! We will get the AFO's and SMO's on August 7th! Can't wait!

[Josh reading with Theo]

[❤️❤️]

Theo's feeding therapist also recommended using is toys during "food play" since he puts them in his mouth on his own.

[Funny stuff]

Theo will NOT roll over his right ear or put his right ear to the ground. It is the strangest thing and no one has been able to figure out why. And believe me, I've asked EVERYONE I cross paths with. Honestly, he use to. He use to lay on his right side or lay on his tummy with his right ear down, but it stopped by the time he turned one. And if you tried to get him to roll over his right ear he would completely freak out and throw up. So, we started doing TMR exercises and rolling Theo over his right ear at bedtime. That way if he freaks out we can give him his Paci and he can just go to bed. BTW, he LOVES to go night-night.

Over the last couple of months he has gotten more tolerant of us rolling him at bed time. He's even started laughing and enjoying the roll! On July 21st I was sitting on the couch and Theo was playing with his toys on the floor. I realized he was on his tummy and he was trying to roll over his right ear to get to his ball! WHAA?! All of a sudden he rolled from his tummy onto his back... and I waited... I waited for the cry, but he didn't even seem to notice what happened! YAY! It's progress, right?!

Theo is VERY motivated by his toys right now. He will roll, shimmy, squirm, and even push with his feet, to get to his toys. He's a long ways from crawling, but he's definitely on the move!

[Off of his blanket, off of the pad, off of the carpet, and onto the hard wood floor]

On July 23 we got our first glimpse of what the MLB season will be like. It was so strange to see the players in mask with a fake crowd behind them.

[Theo still loves his robot friend!]

[More funny stuff]

Josh continues to work hard and he still likes his job! We are very grateful that he has continued to work during the pandemic.

We found out early Friday (July 24th) morning that Tommy Rivs was transferred to another hospital and was diagnosed with Primary Pulmonary NK T-Cell Lymphoma. It's a rare form of cancer and the prognosis for this type of cancer is poor. They are starting him on a high dose of chemo and hopefully will see positive results. Read more here.

My heart continues to break for him and his family.

He needs all the love and prayers that the world can offer.

People all around the world are #RunningForRivs

I had been planning on running a 20K (12.4 miles) race on Sunday, but I decided to make it a half marathon (13.1 miles).

Even though I’ve never met him, I feel like he’s had such a huge impact on my life. Today I ran for Rivs, who is in the hospital fighting for his life. He needs thoughts, prayers, and anything we can send his way. Please think of him, his wife, kids, family, friends, and doctors.