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.]
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