End of July and Aunt Missy Comes to Visit

This quarantine has been hard on us for a lot of the same reasons it's been hard on everyone. The hardest thing is the isolation (which I wrote about before) and the fact that it's so hard to leave the house without help. It's hard being away from family and friends. I literally have no friends or family here (do therapist and doctors count?). I rely HEAVILY on Marco Polo, FaceTime, and text messages to fill my need for social interactions. So, when Missy decided to come and visit I couldn't have been more excited!

[Missy and Theo]

[She even brought her snow cone maker and syrups! Not as good as Hawaiian Shave Ice, but it's close!]

She stayed for a few days and I could tell how badly I needed a girlfriend (IN PERSON) to just talk to. Don't get me wrong, I love Marco Polo, but having someone talking back to you is so great. 

While Missy was here we got gyros and pizza! Don't worry, I got back on WW right after she left 😬

Thanks again for coming to visit! Come back anytime!

[I'm so ready for some Lakers basketball!]

Theo has been working hard on his stamina. He is able to sit in his chair (without complaining) for 90 minutes. He loves to play with his toys and he is getting good at hitting is button with his left hand.

[Look at that hair!]

[Theo has started picking up his musical books and iPad and putting them up to his ear.]

I got this awesome Darth Vader Scentsy warmer and wax bars from Kayleen. They smell so good and I love how the Tie Fighters show up when it's turned on!

I have a large bag of pennies. I don't want them. Pennies are dumb and I don't want to take them to the bank. So, I gave them away on Facebook in the local Buy Nothing / Sell Nothing Group! YAY!

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. 

#RunningForRivs

#RageOn

#RunForRivs

#RageDay

#RageForRivs

#DontGetDead

#BeatCancer

#TeamRivs

Here is his GoFundMe. Please donate if you can.

Tommy Rivs Needs Your Help!

This is my iFit coach, Tommy Rivs:

He has been in the ICU for three weeks and was recently put on a ventilator. 

This guy is a husband, father, friend, ultra-marathoner, and hero. He has inspired people around the world to care about themselves and others. I've enjoyed running with him 3-6 days a week for the last 9 months. I've learned so much from him and he's made it so I actually look forward to those long and intense runs.

He desperately needs your thoughts and prayers. 

https://gf.me/u/yg3ipg

Rage On! 🖤🏴‍☠️

Orthopedic Surgeon, Canada Day, 4th of July, Josh in WI, St Judes, and ENT

On July 1st we celebrated Canada Day by going to see the Orthopedic Surgeon!

[My little quarter Canadian!]

Josh, Theo, and I drove down to Peoria so Theo could get x-rays and meet with his Orthopedic Surgeon.

Theo was super brave and held still during his x-rays. I love how they put a little piece of lead over his privates! 

After the x-rays we met with the doctor. 

[Theo finds ways to entertain himself while we are waiting for the doctor]

He did a physical exam and noted how much better (more flexible) Theo's hips were AND how much looser his left hamstring was. I told him we were doing a lot of stretching, hands-and-knees, and standing. We then looked at Theo's x-rays and the doctor noted that there is a chance in the future that Theo may need surgery. As far as I understand, if people aren't using their legs it can cause the neck of the femur to straighten out and then the head of the femur comes out (subluxation) of the socket. This is common with kids that are delayed, not mobile, and moving (crawling and walking) like they should be. He said we can prevent the surgery by making sure Theo is on hands-and-knees and standing as much as possible. That will really help "grind" the head of the femur into the socket. The doctor then showed me x-rays from a surgery that he just did days before. It looks HORRIBLE! They literally cut the neck of the femur and put the head back in the socket. Recovery time is 9 WEEKS in a cast that goes from his chest to his ankles! NO THANK YOU! The doctor told me to "keep doing what you're doing," but to add in more standing time if we can. DONE AND DONE!

We've also been working really hard on "food play." Theo has been sitting with us at the table every night for dinner, so he can see us eating (and enjoying!) food. We also got these silicone pot holders that Theo can "feed" and hopefully it will help him see that eating isn't so bad.

[Frog]

Theo has continued to go to OT once a week. He LOVES Ms. Laura!

Theo is also getting VERY motivated by his toys!

I put some new toys in front of Theo while he was in his stander. He wasn't too excited about them.

We were planning on going to Superior to visit Josh's family for the 4th of July, but with the pandemic going on, we decided that Josh should go without us.

Theo and I stayed at home and watched Hamilton!

Theo knows some of the music and it was funny to see him get excited when the songs he knows comes on.

He even started singing along to "Washington on Your Side." It was so CUTE!

[Star Wars humor!]

Josh drove up to Wisconsin and spent two days with his family. He was able to see his grandparents, mom, sister, uncle, nephew, and cousins. They got brats from Superior Meats (best brats EVER) and went to a party at Shorty's house.

[Josh and his mom, Suzi]

[Josh and his nephew, Braxton]

I'm so glad that he was able to go and spend some quality time with his family!

Theo has these really cool buttons that we can put recordings on. I took pictures of his toys and recorded the toy name on the button. Now Theo can see a 2D picture of the toy, the 3D toy, touch the button, AND hear the word. This will hopefully help his CVI and his understanding of different objects.

[Using the button during therapy]

[Second button]

[It's really hot around here!]

[2020 is a strange year]

On July 8th, Josh, Theo and I made the long trip back to Peoria.

[This is why we don't leave the house very often. Theo has two medications that require refrigeration. We make it work, but it's not easy.]

[Also feeding him on the go is hard.]

Josh and I knew that they would not allow both of us into Theo's appointments, so we were going to switch off while the other person sat in the lobby. Easy, right? Nope. Nothing is easy during a pandemic. When we arrived at the hospital we were stopped at the front door and told that only one parents could enter the hospital and the other one had to sit in the car. I asked her if it was okay if Josh just stayed in the lobby and didn't come into the various appointments, but she said no. UGH. So, what now? Josh has to go sit in the car for the next five hours? We said good-bye to Josh and Theo and I headed to the lab to get his bloodwork done. While we were waiting Josh showed up. YAY! They let him in! Taking care of Theo while we are out of the house is 100% a two person job. I'm so glad Josh was with me!

Josh took Theo to get his blood drawn and then we walked over to get Theo checked in for his ultrasound. Josh took Theo to that one too and I stayed in the lobby. It was Theo's nap time, so every so often I could hear him crying. Josh put on Trolls and Theo was able to calm down enough to finish the ultrasound.

[Two hospital bracelets]

Next, I took Theo to St Judes so we could meet with Oncology and Hematology. They didn't have a room available for us, so they gave us a curtain number and lead us into a large room. This room had about 20 curtain "rooms" and in each of these "rooms" was a child receiving therapy (chemo or radiation) for their cancer. It made my heart hurt so much for those kids and their parents. While we were waiting to see the doctor a few nurses and a palliative care doctor came by. The last time I talked to a palliative care doctor was when Theo was in the hospital after his third embolization (remember that?). It was a bit traumatizing back then and this time my anxiety was a bit high, but they are so nice and caring and they only wanted to stop by and say hi. After a long wait, the doctor came and saw us. She haded me a bunch of paperwork with Theo's lab results. We went over the numbers and she said things were looking good, so we will see them again in 4 months. 

After St Judes, we headed over to see the ENTs. We got there early so we could feed Theo and let him take a small nap.

The doctor checked out Theo's ears and said that the tubes are still in and everything looks great! YAY!

[Theo kept pointing to his ears. Notice the outfit change? Yep, blowout.]

Josh, as always, remains VERY busy at work. But one of the projects he is Chiefing will be done soon, while will be nice!

  

[Picture from work. This is NOT Josh. He doesn't do any of the "work," he's the Chief Inspector.]