Theo's First Day of Kindergarten!

On Monday, August 15th, Theo and I went to Ottawa for his yearly/school check up with his pediatrician. We also got scripts saying that Theo's CNA can feed him, vent him, and give him water. It'll be so much easier for her to do that in the classroom instead of taking him to the nurses office and having the RN do it. I talked to the Dr about our upcoming trip to Europe and my concerns with taking all of his liquid food and medications. I asked if they would write us a letter stating that all of Theo's food is "medically necessary" and does NOT contain meat or dairy and they said they would. I'm not sure if we need a letter like that, but it doesn't hurt to have it just in case.

Even though we aren't able to ship Theo's food to the cruise ship like we planned, we are still going to ship a bag of supplies. Theo's diapers alone take up a lot of space, so we'll be shipping a resupply of those, his puppy pads, wipes, and syringes. Josh and I will also be shipping our "nice clothes" for our date nights on the cruise ship. It'll be nice to show up to our room on the ship and have this bag waiting there for us!

[Bag to ship]

Theo had one seizure today.

On Tuesday, August 16th, I "attended" (via Zoom) two meetings for our Windsor Hills properties in Orlando. The second meeting was a big deal and we were supposed to learn the results from a recent vote. HOWEVER, we didn't make quorum. It's SOOO frustrating that people can't vote. Why would you buy a property and then not care what goes on with the HOA and what happens at the resort. It's beyond frustrating. We are going to try again next month, but I have a feeling we aren't going to make quorum again.

That afternoon Josh, Theo, and I went to Theo's new school to meet with his teacher (Ms Kate) and principal. I typed up a list of things that I felt like they should REALLY know about Theo and passed that out at the meeting. When I did that, Theo's CNA turned to the teacher and said, "See, I told you she was on top of things!" 🙂 I know since this is a new program that they have a lot going on right now. I just want to help in anyway that I can. The meeting went really good and I think we are all ready for school to start!

After we got home we made a few videos for Theo's CNA. One showed her a step by step on how to feed Theo. And the other video showed her how to help him roll over his right ear. When I mentioned his ear, Theo pointed to his ear! Good job, buddy!

My dad had surgery on his back today. He has a herniated disk that is pressing against his static nerve, which is causing a lot of pain in his back and leg. The surgery went well and hopefully he will feel some relief soon!

Theo didn't have any seizures today!

THEO'S FIRST DAY OF KINDERGARTEN! Wednesday, August 17th

YAY! We are so excited for Theo to start his all day, multi-needs Kindergarten. I am not worried at all! I know he is in good hands and that he is going to have a great year!

I told Theo we were going "buh-bye" and he got really excited (like he usually does). But once we got out side and I told him the bus was coming he got SOOOO excited! He looked down the street, saw the bus, and started to kick his legs and giggle. Good luck, Theo! We know you will do great!

The bus picks Theo up at 8:10 AM and doesn't drop him off until almost 3:00 PM, so I have a lot of free time. I ran errands while the carpenter ladies, that are renovating our laundry room, started getting set up in our garage.

[Laundry Room: Before]

The bus dropped Theo off at 3:00 PM and I put him right to bed. His feeding therapist was coming at 4:15 PM and I thought he could use a nap before therapy.

After an hour I went to wake up Theo. He was SOOOO tired, but he participated in feeding therapy anyways. 

Theo still takes a nap every day, so I knew that Kindergarten would be a big adjustment for him. BUT it's even harder on him because his Neurologist keeps adjusting his meds and those seizure meds make him very tired. Theo's CNA told me that he slept a lot during his first day. She said it was completely fine, but he can't learn and grow if he's sleeping so much. Hopefully he will get use to the meds in the next few weeks and will be able to function at school.

Theo had one seizure today.

The next day (Thursday, August 18th) Theo went to school and I went to my yearly check up with the dermatologist. I asked her if there was anyway to remove the sunspots from my face. She said they could and she would set up an appointment for me with the esthetician next week. Great! After my appointment with the dermatologist, I drove north to go get my allergy shots.

I also sent a long email to Theo's Neurologist explaining why I didn't feel like we could increase his medication dose again (we talked about it at his appointment last week). I also asked him if he could send a referral to the Pediatric Epilepsy Center at Lurie Children's Hospital in Chicago. Theo is still having breakthrough seizures and we just can't increase his meds any more. He sleeps so much as it is and when he is awake he is very weak and doesn't want to do anything. If the VNS procedure can help him get off of the medications then we need to give it a shot.

On Monday and Friday Theo has PT at 3:00 PM and on Tuesday and Thursday Theo has OT at 3:00 PM, so I will be picking him up everyday but Wednesday from school and taking him straight to therapy. 

Today I picked Theo up from school, chatted with his CNA a bit, and then headed to OT. 

After we got home from OT Theo took a little cat nap and I hung up my new Harry Potter wands! 

Theo had two seizures today.

On Friday, Theo went to school on the bus and had a great day. He slept a lot, but when he was awake he played with his toys and had a lesson about sharing. That's my bad 😬😬 

[Theo with his fish bowl game]

The carpenter ladies came back today and worked hard getting the shelves installed.

While I was waiting for Theo to get out of school I got a call from the Neurology nurse. She said that she talked to the doctor and we are going to make some dose changes. She also informed me that they will be sending a referral over to the Pediatric Epilepsy Center at Lurie Children's Hospital in Chicago. I heard the wait is long to get in, so fingers crossed we hear from them soon and are able to get an appointment in the next few months. 

I picked Theo up from school and took him straight to PT. He promptly fell asleep in the swing, but Ms Cody knew he had a long day, so she let him rest for a little bit. 

She then moved him to the squeezie where he fell asleep again. Poor guy. This is such a huge adjustment for him, but we'll get there!

After PT, Josh, Theo, and I drove to Chicago to pick up my road bike rental and some Molly's Cupcakes 😋

The ladies worked while we were gone and made more progress!

They got the barn door installed! I love it!

Theo had one seizure today.

The next morning (Saturday, August 20th) I was woken up by thunder and rain. Ugh. That's not a good sign. I turned on the news and our weather guy said that the storms should stop around 7:00 AM and start up again around noon. I got ready and headed out on my rental bike.

I got about 31 miles into my 40 mile ride when it started to POUR! Ugh. I guess the next round of storms got in early. Luckily, I was close to a gas station, so I took shelter there. I called Josh and he and Theo came to pick me up. A little rain would have been fine, but lightning and standing water wasn't going to work for me.

[Taking shelter]

Besides the rain, I had a GREAT ride! Last time I did a 30+ mile ride I averaged 10 miles per hour on my hybrid bike (yes, I'm slow). But on the road bike I averaged 15 miles per hour! It's still slow, but SO MUCH FASTER than my other bike. This rental road bike is a true speed bike. The tires are skinny and the bike weighs half of what my hybrid bike does. That makes a huge difference. If I want to cover more miles then I'm going to need a faster bike. Time to do some research!

Theo had one seizure today.

On Sunday, August 21st, the carpenter ladies came back and worked the entire day on tiles.

I went on a 13 mile bike ride and felt great after my long ride yesterday. My legs were feeling strong, but my bum was sore. I have padded shorts, but the seat on the rental bike was pretty hard.

After my bike ride Josh, Theo, and I went into Chicago so I could return my rental bike. We knew the city would be crowded because of the airshow, but it wasn't too bad. It did rain on us a little bit, but that didn't stop us from walking around a bit and getting lobster rolls at Brown Bag.

Theo was tired, but he did really well on the drive and while we were walking around.

After we got home we put Theo down for a nap in his bed. He slept for about two hours, woke up for a couple hours, then fell asleep in front of his Tonie.

The carpenter ladies worked really hard today! We decided that we wanted the cabinets to go all the way to the ceiling, so they built two custom cabinets. They also laid most of the wall tile. It looks great so far! 

YAY! Pau! He deserves this!

Hot Topic: I don't really like Girl Scout cookies. Don't get me wrong. I was a Girl Scout and I ALWAYS buy them from the girls who are camped outside the grocery store. But there aren't any flavors that I am crazy about. And now they are introducing a raspberry cookie. BOOO! I don't understand why they can't make good cookies. The Girl Scouts discontinued my favorite cookie back in 1995 and I've been sad ever since. #First World Problems