Monday, December 9th:
We increased Theo's Epidiolex dose this morning. The medication is oily and can cause GI issues. After Theo got to school he had a couple of runny diapers and he also spit up. Luckily, he was fine by the time he got home and he didn't have an GI issues the rest of the day.
We got our photo from the Christmas party at The Legacy Ranch! I think it turned out great!
Theo had six observable seizures today.
Tuesday, December 10th:
After we sent Theo off to school Josh went to get his DOT drug screen done for Alaska and I went and got a facial 😊
Josh then put up our outside Christmas decorations!
After school we took Theo to PT and then to The Legacy Ranch to see Sherman and friends. It was his last lesson until the new year. The sweet ladies at The Legacy Ranch gave Theo a present and we passed out the gifts that we made for all of his teachers, therapists, and helpers!
We are in for another deep freeze! -10 to -20 wind chill on Thursday morning!
Theo had four observable seizures today.
Wednesday, December 11th:
Theo got these antlers from Sherman and he took them to school on Wednesday. Ms. Jess said he doesn't really like them 😬
Our Bonsai tree is continuing to thrive during the dark winter. I think the new lamp and my constant care is really helping!
Theo had 10 observable seizures today.
Thursday, December 12th:
Theo was not nice at school today, so Ms. Jess helped him write an apology note to his OT, Ms. Karlie:
Theo knows not to hit. We are very sorry Ms. Karlie!
While Theo was at private OT with Ms. Laura I went hunting for butter cookies. And I found them! I don't know why, maybe it's my Danish heritage, but I LOVE these plain butter cookies!
Since Josh is going to Alaska for work we are going on COBRA for health insurance. This way we can keep our current coverage while he is gone and everything we pay towards over the next few months will go towards our Cigna deductible. It's fun to know that we are going to pay $6300 in premiums AND we will probably get close to our $6400 in-network deductible over the next three months. AND we'll have to keep fighting with the insurance for coverage that Theo needs. It's beyond frustrating and if I think about it too much I start crying. So, let's move on.
I have a few nice dresses that I bought years ago for when we go on cruises, but they are in the back of the closet so I forget I have them. I dug out this floor length gown and decided I should wear it to dinner on Saturday. I took a picture and sent it to Missy for advice about jewelry. I'm not very good at taking selfies. I definitely need more practice!
Theo had 12 observable seizures today including one that were 84, 110, 73, and 63 seconds long.
Friday, December 13th:
After we sent Theo off to school I did some laundry and started packing for our short Chicago getaway. Around 11:30 AM I received a call from the school. They told me that Theo was clustering and they had to administer his emergency meds. I told them we were on our way and to see if the EMTs will release Theo to us instead of taking him to the ER (as long as he was okay and not still seizing).
As we were driving to the school I received a call from the EMTs. She said that they checked Theo out and she would be fine to release him to us. I was so happy to hear that!
We arrived at the school, signed some paperwork, thanked everyone for taking care of Theo, and then took him home for a long nap.
Theo was pretty tired for the rest of the day because of the Valtoco. We watched him pretty carefully and I sent a message off to his Epilepsy Specialist to let her know what was going on.
Weekend:
On Saturday afternoon Ms. Jess came over and we went through Theo's schedule. He was very excited to see her!
Josh and I drove into the city and got to the Ritz-Carlton right at check in. We went up to our corner suite where we had a great view of Michigan Ave, the old Water Tower, and Navy Pier.
[Michigan Ave and the old Water Tower]
[Bedroom]
[Right across the street from Lurie's]
[Living room]
After we dropped off our bags we headed to the Club Lounge on the 15th floor.
This lounge is really nice! They have food and drinks available almost all day and they serve dinner and a hot breakfast.
We had 5:15 PM dinner reservations at RPM Steak, so we got ready and headed downstairs to catch our Uber.
We arrived at RPM Steak and were promptly shown to our table. We ordered drinks and then our waiter told us about the specials. I was very interested in the scallops before he told us about the warm crab served with brown sugar butter 😋 And of course Josh was very interested in the truffle risotto!
Josh is getting old, but it was actually pretty dark in there!
[Josh with the truffle risotto and crab]
After the appetizers were gone we ordered our main courses. I got a filet mignon Oscar style (that means it's topped with crab) and Josh got "The Duke" (10 oz ribeye) Oscar style.
We ate everything and it was soooo delicious! We were so full after dinner that we ordered dessert to-go!
We took an Uber back to the hotel, changed into our PJs, watched Home Alone 2, and ate our 14K chocolate cake.
[Can you see the blue hand on the building? That's Lurie Childrens Hospital]
[The cake had little specks of gold on it... so posh!]
I turned off my 5:25 AM alarm and went to be before 11:00 PM. It was glorious!
The next morning we went back to the Club Lounge for breakfast. They had warm scrambled eggs, crispy bacon, breakfast potatoes, oatmeal, yogurt, fruit, salmon, bread, muffins, cereal, and anything else you could want including mimosas!
After breakfast we went back to the room to relax until our noon check out. We then headed to the Christkindlmarket at Daley Plaza.
It was so busy! We had to wait about 20 minutes just to get INTO the market!
Our first stop was Bob's Belgium Hot Chocolate! It was so warm, creamy, and just perfect!
We then waited in line for about 30 minutes for raclette. It was pretty crazy!
By the time we got to the front of the line the raclette with a brat was sold out. Ugh! Josh got a sandwich with salami and then we went to find the stuffed pretzel store.
We bought warm sugar coated nuts, a pretzel stuffed with cheese, and a chocolate croissant. There were a lot of fun other shops to look at too, but we were mostly there for the food! We are planning on going to the Christkindlmarket in Aurora with my parents next week, so hopefully they will have the raclette with brats there!
After the market we headed home. Thanks so much to Ms. Jess for hanging out with Theo so we could enjoy a nice night in Chicago!
Speaking of Ms. Jess and Theo... here's what they did while we were gone:
They held hands,
cuddled,
saw Santa,
[Theo is literally rolling his eyes in this picture 🤣]
sang songs,
and had a dance party!
They had too much fun!