Home Improvements and Urology

Monday, January 16th: Martin Luther King Jr Day

Did you know that MLK Jr is the only other American, other than George Washington, whose birthday is a national holiday? Or did you know that MLK Jrs birth name was Michael? He and his father both changed their names after a 1934 trip to Germany, where they were inspired by protestant leader Martin Luther. 

We had a relaxing day at home and I started listening to a Star Wars audio drama. I had a hard time picturing the characters at the beginning, so I had Wookiepedia accessible to help 🙂

Theo went to PT in the morning and he had five observable seizures today.

The next morning, January 17th, we all headed down to Peoria for Theo's six month post-surgery checkup with Urology. Dr Noh checked Theo's surgery area and said everything looked great and he can officially graduate from Urology! Yay! Theo had graduated from six Specialist so far and now only has to see 11 regularly. It's still a lot, but it's better than 17 🙂

I've been trying to get the OSF in Peoria to send his new doctors at Lurie's the images from Theo's last two MRIs, last two angiograms, and his EEG from February 2022. They've sent over the reports, but not the actual images. I've called numerous times and everyone I've talked to said that they would send the images on DVDs to Luries, but they haven't. I called them again and said I was coming down to Peoria and would be happy to pick up the DVDs. They said on the phone that the DVDs would be waiting for me at the front desk. I was a bit skeptical, but very pleasantly surprised when I went to the front desk and the DVDs were there! 

I sent a message to Theo's Epilepsy Specialist at Lurie's and she was very happy that I had the DVDs and she was looking forward to analyzing his EEG from February 2021. 

[Angiogram - you can clearly see his aneurysm (it's that giant black mass) and the staples from where they cut through his skull to access his brain to fix the fistula]

I made Theo some chocolate pudding with oat milk, but it was a little sticky. I mixed it with some coconut whipped topping and it was a hit! Kinda. He didn't hate it 🙂

Theo had two observable seizures today.

Wednesday, January 18th:

We put Theo on the bus and then I went to the basement to work out. Josh and I then headed out to run a few errands and grab some lunch at Station One. It was pretty good BBQ! The pulled pork was a little dry, but the Mac-n-cheese and cornbread were both delicious!  

After we got home Josh started working on some home improvement projects. We have five of these lights in our home. 

Josh replaced two of them with these new ones that have bubble glass. They look really nice and they put off more light than the frosted glass ones.

He also ordered three other fancier lights, but they won't be here for a few weeks. Those will be installed in our closet, the main door entry way, and the laundry room.

We then replaced these frosted shades in our kitchen with bubble glass ones. 

[Before]

[After]

Theo's feeding/speech therapist came over and we worked on Theo while Josh worked on installing a new chandelier in the dining room.

[Before - I realized I don't have many picture of the old chandelier because I thought it was so ugly, so here's a picture from when the piano arrived 😬]

[During]

[After]

Josh ALSO installed a new rainfall shower head. The old was was tiny and really high up. I never used it.

[Before]

[After]

Theo had two observable seizures today.

The next morning (Thursday, January 19th) Theo headed to school on the bus while Josh and I ran some more errands and worked on our to-do list. Right as I was picking up Theo to take him to OT I received a call from Theo's Epilepsy Specialist, Dr. Garcia Pierce. She wanted to talk to me on the phone about the message I sent her a few days ago (about Theo's medications and the DVDs). I asked her what her thoughts were on taking Theo off of his medications. Before he was diagnosed with Epilepsy and medicated he was having 25 seizures a day. Now he is having 50 a day, but they are less intense. She said they would rather have him have 50 less intense seizures a day than 25 more intense seizures. Those more intense seizures have a higher chance of triggering a tonic-clonic seizure, which can be dangerous and deadly. I had a feeling that's what she would say and I get it. These meds can be awful, but if there is ANY chance that they are preventing a larger seizure then we will keep him on the medication.

We also talked about the DVDs I got from Peoria. She said she will look through everything and once Theo has his PET and MRI on February 6th she will recommend the VNS surgery to her fellow Epilepsy Specialists. Hopefully the Neurosurgeons aren't too busy and we will be able to get that scheduled in the next few months.

[At least we are #1 at something!]

Theo had five observable seizures today.

Friday, January 20th:

Theo had another great day at school and worked hard at PT.

He had four observable seizures today.

Saturday & Sunday:

We didn't even leave the house over the weekend. Theo stood in his Gazelle for almost an hour and sat with us at dinner. We tried to encourage him to play with his toys as much as possible, but he just really wanted to be close to his dada.

We got a tiny bit of snow Sunday morning, but it was all melted by noon. Bummer. I'm so sick of the gloom without the snow.

Theo had three observable seizures on Saturday and three on Sunday.

[I feel this]

[💯]

We didn't go to Star Wars Celebration last year, but I did live stream it in the living room on our huge TV, while texting with my brothers. After they announced that Celebration would be in London this year I told Luke and Ryan that they should come to my house and we can all watch it together. This week Luke bought his flights to Chicago and Ryan said he will drive up from Ohio! I am so excited! We are going to make Star Wars food and hopefully get some awesome Star Wars news! NERDS UNITE!