Sunday, February 5th:
The day is finally here! Disney on Ice: Frozen and Encanto!
We packed our bags and headed north to the AllState Arena in Rosemont.
We were able to park in the front and easily found our seats. We were up in a little balcony area right next to the guys that control the lights and sound system. We rolled Theo to his spot and then set up our chairs.
Theo wasn't very happy when we arrived. He didn't understand what was going on and kept getting overwhelmed. I brought a glow stick for him and a light up toy for Josh to hold, but Theo was not into it!
I've joked before that I thought Theo had Narcolepsy because he falls asleep during stressful situations. I brought this up to one of his therapist and she said that he could have a sensory processing disorder. When you get overwhelmed the body just shuts down and you can fall asleep.
Theo took a little power nap before the show started.
At 3:00 PM the show started and Donald, Goofy, Mickey, and Minnie came out!
The first 45 minutes was a condensed version of Frozen with Olaf narrating. It was super cute and a lot of fun!
When Theo heard a song he liked he would open his eyes and watch the show.
He LOVED when Elsa sang "Let it Go!"
The Olaf song!
After Frozen was over we had a 20 minute intermission! TWENTY MINUTES! That's way too long. Theo started to kick his foot, which means "go, go!" I kept telling him that Mirabel and Bruno were coming, but he didn't care. We tried to entertain him with games and Josh even held him, but Theo was done. He started crying and just kept kicking his foot.
If I had known the intermission was 20 minutes we would have taken him for a walk around the stadium. We just didn't know and I didn't want Theo to miss Encanto.
[Oh, Theo!]
Once Encanto started Theo got a little better, but he was still crying.
He finally stopped crying once the "Strong Song" started. He LOVES that song! And the dancing donkey's were hilarious!
After Luisa's song was over Theo got upset again. He perked up one more time when "We Don't Talk About Bruno" started. After that song was done we decided to head out. Overall the show was adorable and I'm glad we went! Hopefully we'll be able to go again and Theo won't have such a hard time.
After leaving the arena we headed into Chicago. Of course there was traffic, but Theo was in a good mood (he knows he's safe in the car), so it was fine. We arrived at our Marriott, checked in, and headed up to our room on the 10th floor.
For dinner we ordered sandwiches from Honey Butter Fried Chicken and it was DELICIOUS! 🤤
[All tucked in for the night]
Monday, February 6th:
I felt like I didn't get any sleep. The bed was a little too hard and I was tossing and turning all night. We arrived at the hospital (it is only three blocks from the hotel) at 5:20 AM and went to the check in desk.
I had a note saying that we needed to be on the 19th floor at the Epilepsy Monitoring Unit (EMU) at 5:45 AM, but the front desk ladies said they couldn't let us up until 6:00 AM. Ugh! Why?! I hate being late! I think they could tell I was upset so they got us checked in early and we headed upstairs.
We arrived at the EMU and they started attaching the electrodes to Theo's head. While they did that I went to talk to the nurses. I was able to get a hold of Theo's images from his MRI's, angiograms, and EEGs. I put them in an envelope and asked the nurse to make sure they got to Theo's doctor.
After the electrodes were hooked up (it only took 15 minutes since these ones are more temporary then the ones they put on during overnight stays) we headed down to the 5th floor to get checked in for the PET and MRI.
We met with a few nurses and got Theo comfy in his hospital bed. I went over Theo's schedule with the nurse and I told her that Theo can be a hard stick for the IV (and bloodwork). She said she would bring in an ultrasound machine. It was pretty cool to watch the screen as she found a good vein and gave him a quick poke. He didn't even squirm! They got the labs and then we all headed to the PET scan staging room. They hooked Theo up to an EEG and injected sugar into his IV. We had to sit in the room and rest for about 45 minutes while they did the EEG and the sugar spread through Theo's body.
The anesthesiologist came in and said that they will take great care of Theo. We have no doubt! They took him away and told us it would take about 30 minutes for the PET scan and then they would transfer him to MRI where that would take about 60 minutes.
Josh and I headed out and got some breakfast at Panera. After about an hour we headed back to the waiting room where I promptly fell asleep. 90 minutes later we were taken back to Theo's room where we found him sleeping like an angel.
They had to take the electrodes off after the PET scan and they washed Theo's hair. The nurse was worried Theo would be cold since his hair was still wet, so she had him wrapped up in a lot of warm blankets.
[View from Theo's room! That's the old water tower!]
We woke Theo up slowly, fed him, and then got discharged from the hospital. Everything went great!
On our way home we swung by the Nutella Cafe to get some cookies!
Now we just have to wait. Theo's doctor is going to present all this data to the rest of the Epilepsy team and then they'll decide what the next step will be. Hopefully they will vote for the VNS and then we can get that scheduled.
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