I've noticed over the last couple months that Theo has been shivering/trembling for a few minutes after he wakes up (from a nap or in the morning). It usually stops within 10-15 minutes. But over the last two weeks it seems like it's been getting worse. When he wakes up he will shiver/tremble for about 30 minutes and he gets goosebumps. He doesn't feel cold to the touch, but he is acting like he is very cold. It appears that the shivering/trembling has been getting worse as we've increase his medications. Theo's also still very tired. When he's not sleeping, he's sleepy. It's hard to find a time when Theo is awake enough to work hard on his therapies. He's regressing physically and it has me worried. I've been in touch with Neurology and I'm hoping we can get in to see the Epilepsy Specialist soon.
Monday, August 29th:
Putting Theo on the bus in the morning is one of my favorite things lately. I roll him outside and we walk around the driveway until I see the bus coming up the street. I then turn Theo towards the road and tell him the bus is coming. He will look down the street (he knows where the bus comes from), kick his legs, smile, and squeal! It's adorable! Once the bus pulls up his driver, Ms. Gina, steps out and says good morning before she opens the side door and lowers the lift. Once the lift is lowered we get to see the bus aid, Ms. Karen, and Theo's best friend, "Gary." We load Theo onto the lift, lock his wheelchair in place, and then Ms. Gina activates the lift. Once Theo is safely on the bus, Ms. Karen rolls him to his spot in front of "Gary." It's at this moment that "Gary" sees Theo and waves and reaches for him. They both start laughing and waving at each other. It's seriously the sweetest thing and it melts my heart! I love that Theo has a friend! Ms. Gina told me that "Gary" and Theo "talk" and laugh the entire ride to school on most days. They are also the only boys in their class, so they gotta stick together!
After I sent Theo off on the bus I went for a run and did the last workout in my cycling program.
[Theo playing with his fish game at school]
Just an hour or so before I was going to leave to pick up Theo I noticed that the sky was getting really dark. I looked at my weather app and saw this:
Oh boy! I turned on the news to see what they were saying, but I quickly lost the satellite.
The storm was pretty loud and heavy, but luckily it was over pretty quickly. The storm was heading east at 60 mph and I was heading west to pick up Theo. The timing couldn't have been better and the sky was blue by the time I arrived at Theo's school.
I talked to Theo's CNA for a few minutes and then Theo and I headed to High Hopes for PT. Theo fell asleep during therapy, but when he was awake he worked hard.
Theo had two seizures today.
The next morning, August 30th, I got Theo ready for school and sent him to school on the bus with "Gary."
Theo didn't have any seizures today!
On Wednesday (August 31st) I went on a bike ride after I put Theo on the bus. I decided to go check out the I & M Canal Trail. The trail is about 80 miles long and is pretty flat. It varies from paved, to partially paved, to crushed limestone, to partially crushed limestone. I thought I should check it out myself to see how my bike would handle the terrain.
Josh bought a ghost pepper plant back in May and it finally started producing peppers. I told Josh he wasn't allowed to cook them in the house since the last time he did that I felt like I got hit in the face with pepper spray. It was awful!
The nearest trailhead was only 15 minutes away, so I cruised down the road until I found the turn off near the Dollinger Family Farm.
[Classic corn fields of Illinois]
Once I found the trailhead I turned east and headed towards McKinley Woods. Josh, Theo, and I had been there once before, so I was a little familiar with the trail.
The I & M Canal Trail was very pretty, mostly shaded, and the dirt was very compact. The only issue was the amount of spiderwebs. It was insane! For the first 3 miles I just had to keep my head down and power through. Anytime I looked up I got hit in the face by a large spiderweb. I stopped briefly on a bridge to take a picture and when I did all the spiderwebs that had grabbed onto me started floating past me. My arms, legs, and helmet were COVERED, but I didn't see any spiders, so it didn't freak me out too much. It was just a little annoying!
After I passed McKinley Woods, the trail was a bit more busy and I didn't hit any more spiderwebs.
Right before I reached Channahon State Park, I decided to take a break and get off my bike to stretch. The trail turned into a paved road and I thought that would be a nice place to stop. I started slowing down, unclipped my right foot, and then tried to unclip my left foot. Unfortunately, I was not able to get my foot out and I completely fell over with my bike landing on top of me. Luckily, I was stopped and I don't think anyone saw me, but I hit the concrete hard. The left side of my body has some nice cuts and bruises while my right leg smacked into my pedal.
I made a mental note to loosen my clip a tad before my next ride before checking my map to see where I wanted to go next. I knew no matter which way I went I would have to climb a pretty good hill in order to get home. I decided to attempt the McEvilly hill (remember McEvilly? The hill I thought was dangerous so I went to ask the City Council to put in a stop sign?) since there was a bike path there (a rare thing in our village) and I wouldn't be holding up traffic as I climbed.
I rode over to the hill and started my climb. On my way up I passed a lady that was walking her dog down the hill. I said good morning and she said "good luck!" And I needed that! After being on my bike for almost two hours I was pretty tired, but I made it to the top! I now only had a couple hills on Bell to tackle before I was home 🙂
I didn't know where I was going to end up when I left home that morning, but I had a lot of fun on my ride (spiderwebs and all). I decide that I needed to explore the I & M Canal Trail some more. I think it will be a nice place to go for a run too. Running on concrete is rough. Compact soil is so much nicer on your knees!
Theo had an early release from school and took the bus home. He got home at noon and I promptly put him down for a nap.
[I am so glad we will be able to get another booster before we leave on our cruise!]
Theo took a long nap, played with his toys for a little while, and then his feeding therapist came over. Theo tried, but he couldn't stay awake for therapy even with a long nap.
[My sweet boy]a
Battle scars from when I fell off my bike:
[It's hard to get good pictures, but the bruises are there!]
Happy birthday, mom! Hope you enjoy your pickle ball set!
Theo didn't have any seizures today!
The next morning, September 1st, Josh went off to work, Theo headed to school on the bus, and I went down into the basement to work out. A pretty typical day for us 🙂
Theo has been taking naps in the car, which he REALLY needs, but when he falls asleep his head dips down to his chest and he doesn't seem to sleep well. I got him this awesome neck pillow and it's been a game changer!
After we got home I worked on updating Theo's speech binder with all of his new Tonies. Yes, we are a bit obsessed with Tonies!
Theo sleeps on his stomach or in 3/4 prone, so we haven't gotten him a pillow yet. But I thought he would benefit from having a small flat one.
[He's not totally sure about it yet]
We moved the vacuum and some cleaning supplies into the stairway to the basement. Josh ran an extension cord up from the basement, so the vacuum can charge, and hung some clips on the wall. I hated to take up space in our nice new laundry room, so I think this stairway will be a nice home for these items 🙂
Theo had two seizures today.
The next morning, September 2nd, I got Theo off to school and then got a call from Neurology. They want Theo to have some bloodwork done so they can check his medication levels AND his thyroid levels. They also want him to continue taking all of his current medications until they are able to analyze his bloodwork.
After school I took Theo to PT. Josh was waiting for us when we got home since they got done with work a little early. Who doesn't need a half day before a three day weekend?!
Theo had one seizure today.
The next morning, September 3rd, we headed to the hospital in Ottawa to get Theo's blood drawn. They are so good with Theo and I love that they allow him to stay in his wheelchair.
That afternoon Josh worked on the cars while I played with Theo.
He was so tired and didn't want to be in his stander until I gave him Peek-a-Boo Barn!
He perked right up and stood for 30 minutes!
Josh was complaining about our garage door being dirty, so I scrubbed it with Clorox wipes and Mr Clean magic erase pads. Not long after I fished I noticed these greasy fingerprints on my beautiful door! I'll give you one guess who that was!
Theo didn't have any seizures today.
We had a pretty lazy Sunday (September 4th) at the house. It rained on and off all day, but Monday was supposed to be nice, so I made plans to go back and ride more of the I & M Canal Trail.
I've been trying to encourage Theo to army crawl (remember when he use to do that?!) by putting all of his toys together a few feet from him. Instead of crawling, he just stares at his toys and gets frustrated. It makes me so sad that he too tired to crawl ðŸ˜ðŸ˜
Theo had three seizures today.
The next morning (September 5th) I put on my padded shorts, packed my backpack, put my bike on top of the Traverse, and drove to the trailhead by the Dollinger Family Farm. Instead of going west like I did last time, I headed east towards Morris.
About 3.5 miles into my ride I started hearing a strange sound from my bike. I quickly stopped and realized my back tire was flat. I got out my pump and tool set, but I wasn't able to get the tire inflated. I called Josh and asked him if they could come and get me. Luckily, I had passed another trailhead a mile back. I texted him the location and then started walking my bike along the trail. During my walk I had a few fellow bike riders stop and ask me if I was okay. I said I was good and thanked them for asking. What a great community!
Thanks Josh and Theo for coming to my rescue! After we got home we put Theo down for a nap and then we examined my tire. Turns out the inner tube had a hole, so I needed a new one. I ran to REI and talked to a nice guy at the bike shop that helped me pick out the right tube. He also suggested that I get a pump for at home use that has a pressure gage on it. He said I need to check the pressure before EVERY ride (oops!) and if I don't it can cause the tube and tire to rub and will cause a flat, which is likely what happened. Good to know!
I now know how to properly use my patch kit, how to remove my tires, and, more importantly, how to put my tires back on 🙂
Theo had one seizure today.
Next weekend is D23! Can't wait!
I hope you all had a great Labor Day weekend!
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