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

Birthday's and Doctor Appointment's

Happy 5th birthday, Theo! I love this super strong, super silly, and super sweet boy!

Ms Jess (Theo's CNA) stopped by to bring Theo a few presents and say hi! While she was here we showed her how to feed Theo and answered any other questions that she had. Even though she was with Theo at preschool last year, she never was able to feed him or give him water. But at kindergarten she will be able to.

Ms. Becca also came by that afternoon for PT and to bring another gift.

Theo also got a couple of Star Wars books from my parents and a card from cousins Porter and Kenna! Thanks everyone for thinking of Theo on his special day.

And Josh and I got him some new Tonies! He just LOVES music!

Ms Becca always makes Theo laugh with his pompom and the teeth brushing song!

Theo had two seizures today.

Tuesday, August 9th, was my birthday! Josh bought me an awesome massager and I bought myself a Shakti mat. 

I won't show you my whole back, but the Shakti mat is covered with thousands of small spikes and it leaves you very red after you use it. The first few minutes REALLY hurt, but if you can breathe through it then the next 15 minutes are pretty great and can be quite calming!

Thanks Josh and Theo for spoiling me!

Theo had two seizures today.

The next day (August 10th), Josh, Theo, and I headed down to Peoria. First we went and saw the Developmental Specialist at Easter Seals. 

We haven't seen her since right before Theo's EEG and hospitalization for seizures, so we had a lot to catch up on. She sent in new orders for AFOs and SMOs, gave us information about waivers and the PUNS list, sent a referral to Nu Motion for a in-home seating system (our current one is 12 years old), and sent a referral to Actistyle for diapers (we keep trying to get waivers so we can qualify to get diapers, but we keep getting denied, hopefully this works). She also examined Theo and was happy to see how well his hips were doing and she commented on how much more flexible he is.

Next, we went and saw Dr. Sinha with Neurology. Theo slept in his wheelchair during the appointment, which was great because it gave us a chance to talk to the doctor AND we could show Dr Sinha how Theo is reacting to his medications. Theo's seizures have gone down significantly (25 a day to 1-3 a day) since he started on medication, but the meds just make him so tired. It's hard for him to function and all he wants to do is lay on the floor or sleep. Dr. Sinha told us that Theo is almost maxed out on all of his seizure meds (based on weight), except for one. He wants us to increase the dose of the Clobazam twice over the next week. If Theo continues to be sleepy then we can send Dr Sinha a message and we can start looking into other options. It's great that Theo's seizures have decreased so much, but he can function and have a good quality of life if all he is able to do is sleep.

We also talked about Vagus Nerve Stimulation (VNS) surgery. I've seen a lot of kids on my Epilepsy FB support group that have has this procedure done and it had been great for them. Dr. Sinha said that if the medications aren't able to stop Theo's seizures then he would be a candidate for VNS. We will have to see an Epilepsy Specialist at another hospital for a second opinion, but if they approve him then the surgery can be done at our hospital by Theo's Neurosurgeon. It sounds like a great option and I am excited to learn more about it. These medications are just so hard on his little body. It would be nice if we were able to control the seizures with the VNS and we could wean him off of his four seizure meds.

After seeing the Neurologist we headed back home. Theo did really well in the car today because he slept most of the time!

Theo had one seizure today.

The next day (Thursday, August 11th) Theo and I headed back down to Peoria so we could see Dr. Steve the Ophthalmologist. I downloaded a couple movies for Theo to watch during the drive and he did great (again, he slept more of the time).  

Theo had to get his eyes dilated, so I knew it would be a longer appointment.

After the initial examination Theo was given eye drops and then we were sent into a darker room to wait for his eyes to dilate. I fed Theo and he caught a little cat nap before we were called back to see the doctor.

We've been seeing Dr. Steve since Theo was a baby and he is truly one of the kindest people I have ever met. After his examination he told me that Theo's eyes look great and he should continue to wear his glasses as much as he can. We'll see him in three months for a non-dilate check up.

Theo had one seizure today.

On Friday, August 12th, Theo had PT and then we Zoomed with his feeding therapist. He kept falling asleep during his feeding therapy so we had to cut it short. I'm glad that his therapist are so understanding.

Andie sent me this cute video of Porter watching the Figment ride while playing with Figment! 

Theo had three seizures today.

Over the weekend we mostly stayed at home and did a few things around the house. Josh put up these awesome lights for me, so now we can really see the Harry Potter wands!

Now I just need more wands 🙂

[Super strong!]

I've been riding my hybrid bike as much as I can, but I'm getting frustrated with my speed (or lack thereof). Every time someone on the road passes me they are riding a road/speed bike. I started looking into these bikes, but they are VERY expensive. I decided that I needed to rent a bike for a few days and make sure it was a good fit before I consider buying another bike. I found a place in Chicago that rents out road bikes (most places around here only rent out electric bikes or cruisers), checked the weather for next weekend, and then booked my rental.

Literally the next day the weather prediction changed and it looks like Saturday and Sunday we are going to get rain! UGH! Hopefully it will be scattered storms so I can get in a few hours of riding. Last thing I need is to ride on a rented bike in the rain on a skinny tire. 

[Trying to decide how to pack Theo's food and diapers]

Did you know those peppers in our back yard are ghost peppers? I watered them every day, but I didn't know what they were. I told Josh he couldn't cook them in the house (he did that once in North Dakota and I almost died), so he gave a few of them to his friend, Lucas. Have you ever been hit with pepper spray? That's what it feels like when someone cooks with ghost peppers! I guess we'll have to wait and see what Lucas cooks up!

Theo only had one seizure on Saturday and one on Sunday.

Quick Trip To Orlando - Part III: Heading Home

The next day (August 1st) I left the condo, headed to the airport, dropped off my rental car, started down the escalator towards the terminals, realized I forgot my luggage in the car, ran UP the escalator, got back to the car, found my luggage (PHEW!), and then headed back to the terminal to check in for my flight. I got to my gate three hours before my flight (go figure), so I walked around the airport, and read my book. My flight was again very easy (I even got an aisle seat in the Emergency Exit row). Josh and Theo picked me up from the airport and we went straight home so I could take a COVID test. I woke up on Monday with a dry throat. I figured it was just allergies since I forgot my allergy meds at home, but I wanted to be extra sure that it wasn't COVID before I took off my mask and interacted with Josh and Theo.

[Negative!]

I also took another test on Tuesday (August 2nd), just to be sure. And again, it was negative.

Josh and Theo had a great time while I was gone. His Neurologist increased his meds again, so Theo has been tired, but he still worked and played hard. Josh said he only had one seizure a day while I was gone. Hopefully we will get them fully under control soon!

[Super strong!]

[Good thing my bag was small or else I would have bought more!]

These will make a fine addition to my, *cough* I mean, Theo's collection! And there is still plenty of room for more hilts.

Over the next few days we got back to our regular schedule. Theo had therapy most days, Josh went back to work, and I started packing for our trip to Europe 😬 Yes, I know we don't leave until September 25th, but there's a lot to do!

[So tired in the stander]

Since we will be in Europe for a week before we get on the ship, I thought it was a good idea to look into shipping some of Theo's medical supplies (food, syringes, diapers, etc) directly to the ship. That way we could have a resupply and we wouldn't have to take three weeks worth of food and diapers (things we can't easily buy) with us. I found a great company that partners with Holland America (HAL) and I gave them a call. I talked to a nice lady who assured me that our resupply would be delivered to the ship and would be waiting in our room when we arrived. BUT we can't ship anything that can be "consumed within the body," so food is out of the question. She said that customs will send it all back and we won't get our shipment. UGH!

I did the math and figured out that we will need to bring 40 lbs of Theo's food with us to Europe. That's 40 lbs of JUST HIS FOOD! Luckily, we can ship his diapers, syringes, and other things, but since we can't ship the food we will have to pack it in our bags when we fly over.

I started to get worried about bringing that much liquid food into another country so I looked up the rules for the EU. Apparently you can't bring in any meat, milk, or their products into the country due to an outbreak of Foot and Mouth Disease. Luckily, Theo's food does not contain any meat or milk. I reached out to the EU travel commission to double check the rules. I also sent an email to Kate Farms asking them to send me a letter stating that the food does not contain any meat or dairy. I am also going to get a letter from Theo's GI specialist stating that this food is given to him for medical reasons and he has to have it. We probably don't need all that, BUT it's better to be safe then sorry!

[This makes my heart so happy! I hope it happens!]

[Theo wasn't interested in his food. I showed him that mommy likes her food and he should too, but he didn't care]

I've gotten a lot of positive feedback about our flowers, so I went back through my photos to see how far they've come since May.

[Three planters: How it started vs How it's going]

[Tree and flower: How it started vs How it's going]

[Yellow daisy pot: How it started vs How it's going]

[Middle planter: How it started vs How it's going]

[Red daisy pot: How it started vs How it's going]

Thanks dad and Josh for planting all these flowers! I think next year we will use less ferns, but the rest of the flowers look great!

Again, I want to thank Josh for hanging out with Theo so I could go to Orlando! I know Josh and Theo love their "guy time," but it can still be hard to take care of Theo by yourself. I'm glad I was able to stay at the condo, so I could check on a few things. Our cleaning ladies are great at keeping us up to date, but it's nice to check in and see it in person.

Thanks again to Luke and Andie for inviting me and to the Smith family for allowing me to join their family vacation. I had a blast! I think I was pretty well behaved, so hopefully they'll let me join them again in the future!