Theo struggled today at school. He was a bit crabby and needed help to finish all his assignments. He did say he wanted to go to an amusement park and would ride all the rollercoasters. He's so adventurous!
Josh made the seven hour drive north and arrived at his grandparents house late that night.
Theo had 12 observable seizures today including one that was 71 seconds long.
Tuesday, March 19th:
Our morning was a bit chaotic! I got up at 6:00 AM, gave Theo his meds at 6:30 AM, had an HOA board meeting call at 7:00 AM, gave Theo his breakfast at 7:05 AM, got Theo ready at 7:40 AM, got Theo on the bus at 8:00 AM, and let in the plumbers at 8:05 AM all while listening in on the HOA board meeting call. I always listen into the board meeting calls, but today I had something to say, so I had to really pay attention and wait for my name to be called.
A few hours later the plumbers told me they were done. They got the two sinks in the vanity up and running and changed out the toilet handle so it matches the rest of the room. We just have a short punch list left for the contractor and the glass still needs to be installed, but as of right now it's a fully functional bathroom!
Theo had a great day at school! He had a lot of his pouch snack and a few yogurt bites. He also tried pickles and a lemon spray! Ms. Jess said he liked both of them and even asked for more pickles!
After school I took Theo to PT/OT at High Hopes with Ms. Laura and Ms. Cody. They had Theo work on pushing up through his arms so he can do that on Sherman. It's a work in progress, but he's getting stronger!
After PT/OT we went to The Legacy Ranch for Theo's horseback riding lessons with Sherman. Theo is really feeling comfortable with one of the volunteers (the lady in the blue jacket) and I saw him holding her hand today while he was riding. It was soooo sweet! After his lessons Theo fed Sherman some carrots 🙂
When we got home there was a package waiting on the front porch. It was Josh's new indoor Golden Gate ficus! Isn't it cute?!
[Stupid box of packing peanuts... they make such a mess]
He looks perfect next to our other plants!
Theo wanted TWO friends with him when he was going to bed. So sweet!
After I put Theo to bed I jumped on a book club Zoom. While I was listening I cleaned out the vanity cabinets and drawers, so I could start putting things away. Unfortunately, the cabinet had water in it. I cleaned it up and put a dry paper towel in there and ran the water. The pipe started to leak a little bit, so I shut the water off and made a note to have the contractor look at it.
I put paper towels under the two other sinks and ran the water. Both of those stayed dry. Phew!
My book club was so much fun! We are reading The Warmth of Other Suns. The book mostly follows three black people and their journeys out of the south during one of the biggest migrations in human history. It's a well written and researched book (the author interviewed over 1000 people and it took her 12 years to write) and I highly recommend it! Buy it here or at your local book store!
Theo had six observable seizures today.
Wednesday, March 20th:
After I got Theo ready and on the bus, I went for a long jog/walk. I'm still in a calorie depletion, so it's hard to do high intensity workouts, but I still want to stay active!
Later that morning we found out that the Gemini Giant sold for $275,000! People online were devastated. The tiny town of Wilmington worked so hard to raise money, but they were only able to raise about 50K.
Soon after the auction was over the City of Wilmington put a a press release. It said that the Joliet Area Historical Museum placed the winning bid and is donating the statue to the City of Wilmington! With the help of generous donors and grants the museum was able to place the final bid in a tight, fast-paced auction! That night the Gemini Giant was moved to a safe location and later they will put it in a local park. YAY! Congrats to the people of Wilmington and anyone who loves Route 66 and American history!
Theo came home on the bus and took a quick nap before Ms. Jen came over for feeding therapy. Theo was very squirmy and seemed like he was uncomfortable in his seat. So we moved therapy to the floor so I could stretch Theo out. His tummy was a little upset, so we didn't return to the table. Theo has been working very hard at school with his food, so Ms. Jen is very happy with him!
Theo had four observable seizures today.
Thursday, March 21st:
Theo headed off to school and I headed to Mobility Works to get the oil changed and some maintenance done on the van. They were able to adjust the sliding doors and remove some of the rust on the ramp too. They also coated the ramp area which should help prevent rust.
Ms. Laura cancelled OT, so Theo rode the bus home from school. Ms. Jess said he did great and ate a lot of his pouch food! Theo did take a nap at school (which he hasn't done in a while) and he took another nap when he got home. I think he may be getting sick. Bummer!
That day we got some big Star Wars announcements:
-It's the 25th anniversary of Episode I, so it's heading back to the big screen!
-Some movie theatre's are going to have a nine movie marathon on May 4th!
-AND the dates for ticket sales for Star Wars Celebration Tokyo were released!
[Official artwork of SWC Tokyo!]
I will be on my computer at 5:59 PM on May 2nd pushing that refresh button, so we can try and get Jedi Master passes. They sold out in seconds last time, so I doubt we'll get them but we have to try! If we don't get the Jedi Master passes we will get the three day passes. Either way it will still be a lot of fun!
Josh had spent the last three days with his family in Wisconsin. He spent a lot of time at the hospital with his mom and Grandpa Joe. Grandpa is getting better day by day and they are hoping to release him from the hospital on Monday. Josh was able to spend a few hours with his dad and he was able to go over and visit his sister, Jessi. We hope Grandpa gets better soon and is able to go fishing a lot this summer!
[Look how big this hospital room is! And check out that view!]
[Josh and Jessi]
Theo had six observable seizures today including one that was 111 seconds long.
Friday, March 22nd:
We woke up to sleet and rain! It was a bit dramatic! When I looked at the weather earlier this week I saw that Minooka (where we live) and Superior (where Josh's family lives) were pretty clear. BUT things changed since this is springtime in the midwest! Turns out the bulk of this spring storm would be impacting central Wisconsin, which is exactly where Josh would be driving today.
Luckily he left northern Wisconsin early and was only impacted by the storm in a few spots during his drive south.
It was the last day before spring break, so Theo's school got a few visitors!
Awww!
Theo loved to pet the baby goat! I think we should get him an emotional support goat! 🤣🤣
It was an early-out so Theo came home on the bus, had a nap, and then we went to PT.
Josh got into town right when we got to PT. It was perfect timing! We are glad he went to see his family, but we are also glad he is home!
Theo had three observable seizures today.
Weekend:
Theo woke up coughing on Saturday morning. I knew he was getting sick! It's not a fun way to start his spring break. Poor guy!
We increased his respiratory therapy and cancelled our Ghostbusters date night. Hopefully we can keep this virus under control and keep Theo out of the hospital.
["Ball on my face"]
["Ball on dad's face"]
This week I received an update on SB2908, the adult/universal changing table (Sami's Law) bill. The bill has been assigned to a subcommittee with no hearing date scheduled. My senator (Sue Rezin) sent a letter to the chair of the committee, Senator Aquino, asking that they hear the bill, but she hasn’t heard back yet. I sent out messages and posted on Facebook asking everyone to call Senator Aquino's office and ask him if he can move the bill forward. I called and his assistant answered. She said that they will keep track of how many people call and she'll let the Senator know there's a lot of interest! This bill will do so much to help Special Needs people and their families!
In other good news we will soon be able to buy blue milk at our local grocery stores. It's a great time to be alive!
