To Peoria and Back (Three Times)

Monday, July 3rd:

Today was a VERY busy day! At 7:30 AM Josh, Theo, and I jumped in the van and made the long trek to Peoria. 

First we met with Dr Stewart with Pulmonology. We haven't seen her in person since Theo was released from the hospital, but we have been in contact and had a video visit since then. 

We filled her in on all things Theo and she was very happy that we've been able to keep Theo out of the hospital with all of our tools (oscilation vest, nebulizer, cough assist, inhaler, etc) even though Theo has been sick twice since his last hospitalization. I told her that Neuromodulation mentioned doing a Sleep Study (since the VNS can affect breathing) and she thought that was a good idea. She went ahead and ordered a Sleep Study and a chest x-ray and we'll see her again in a few months.

We then headed to the next building to see ENT. APN Amanda looked in Theo's ears and said that the tube is still in his left ear, but she couldn't tell with his right ear because he has a lot of ear wax. She told us to put ear drops in his right ear twice a day for the next two weeks, so we can get that all cleared out. She also ordered an audiogram that we can get done once Theo's right ear is clear. 

We then made the long drive back home where we were able to relax for a few minutes before Josh took Theo to PT.

Ms Cody said Theo did great and he was very alert!

HAPPY INDEPENDENCE DAY!

In the morning the three of us headed to the local clinic to see if we could get Theo's bloodwork done there instead of going all the way to the hospital in Ottawa. They said they could do three out of his four orders, but since one of them has to be done at a hospital we should go to the Morris hospital to get it all done there. We haven't been to the little Morris hospital since Theo fainted, but it's a lot closer than Ottawa, so we went there first to see if their lab was open and able to do his bloodwork. They were! YAY! It's good to know that we can just go to the hospital in Morris (20 minutes away) from now on for labs. 

That night we stayed at home and watched the fireworks that were set off in our neighborhood. Our neighbors went all out and bought tons of HUGE fireworks. It was a great show and we could watch it from our kitchen, so that was a plus!

Wednesday, July 5th:

Josh went back to work today while Theo and I went back down to Peoria. Our first stop was imaging so Theo could get an ultrasound. Theo was very patient and did great during the ultrasound. Next, we headed over to St Judes to see Oncology and Hematology. The doctor did her physical exam and said she didn't see any concerns. She didn't have the results back from the ultrasound yet, but once those come in she will call me. Back in December they found a lesion on Theo's liver, but during the last ultrasound (when he was in the PICU) they didn't see it. She said that sometimes they can go away on their own and even if it does show up again they wouldn't do anything about it unless it was affecting blood flow. 

On our way home I got a message from the radiologist stating that the ultrasound was clear. YAY!

We headed straight from Peoria to Thrive so Theo could see Ms. Laura for OT. Luckily, he took a good nap during our two hour drive and he worked hard for Ms Laura.

After OT we went home and then had feeding therapy with Ms Jen. Theo took a few big bites, but didn't seem to interested in his food. Ms. Jen recommended getting a dental mirror, dipping it in cold water, and then rubbing it on the inside of his cheeks to "wake his mouth up." I ordered a mirror and we will give it a shot!

Meanwhile at Josh's work, the contractor hit a waterline, which caused some flooding and a boil order for the area. Oh boy!

Thursday, July 6th:

I needed to run some errands today, so Ms. Jess came over to hang out with Theo for a few hours. He loves hanging out with her and it looks like they had a lot of fun!

[Theo has been pushing his vest down and he thinks he's so funny!]

After my errands I took Theo to OT. He was a little more whiny today, but he still worked hard.

Friday, Jul 7th:

Josh headed to work while Theo and I went back down to Peoria. Third time this week 🤦‍♀️ Luckily, I have plenty of podcast to listen to and Theo usually does pretty well in the car.

Today Theo got a hip x-ray and then we met with his Orthopedic Surgeon, Dr. Akeson. Theo was in a bad mood after his x-ray and I was worried he wouldn't calm down before the doctor saw him. But once I got him on the exam table and turned on his music videos he calmed right down. Phew!

Theo stayed relaxed and let Dr. Akeson stretch him out. I mentioned Theo's tight hip and that a radiologist noticed possible scoliosis during his last chest x-ray. Dr. Akeson checked Theo's flexibility and showed me some stretches I can do with Theo to help his right hip and his tight adductor muscles. He then looked at his back. The doctor noticed there is a slight curve in Theo's lower back. He said this is likely related to his tight right hip. If we get that adductor muscle stretched out and the proper rotation back in his hip that will help his back. Dr. Akeson wants Theo to spend as much time as he can in his stander too. We will see him again in the spring 🙂

We made it back home with just enough time for a quick rest before heading to PT.

Weekend:

I had no desire to go anywhere this weekend, so we just stayed home (Josh worked on Saturday) and played. 

I updated this list from our time at home during the pandemic. We are going to try to do most of these everyday of the summer to keep Theo on track!

[Working hard in the gazelle]

[I don't have a Twitter handle, but I did sign up for Threads today]

[NICE!]

I like to be outside, but I hate bugs. I saw this video and thought it was such a cool idea! Motorized screens?! Yes please!

Theo had 3-5 seizures every day this week. We are still weaning him off Clobazam and he is reacting a lot better than I thought he would. Sometimes he is irritable, but he is waking up more and is getting stronger! 

While we were in CA we got professional photos taken by my cousin Annie. They turned out fantastic!