Blood Donation and Blood Moon

Monday, March 10th:

Theo headed off to school and I went to my appointment with the Red Cross. Going once every 112 days for 1.5 hours really isn't that inconvenient AND it's for a great cause!

I always get cold when I donate, so I brought my big beanie and a fleece jacket. I didn't have any issues during or after my donation (can't say the same for another person that was there 😢).

[Gotta get my Oreo's!]

Thanks Red Cross! See you in four months!

That afternoon I listened in on our condo HOA meeting and then I took Theo to OT. After we got home I received an email from d'Escoto with my offer letter! YAY! Our job here is starting back up on March 17th! I am being hired as a full time Office Manager and Josh will be the Chief once he gets home. It's nice to know that he'll have work here after he gets back from Alaska!

Theo had seven observable seizures today.

Tuesday, March 11th:

Theo went to school while I stayed at home and waited for the AT&T guy to show up. We decided to switch to AT&T fiber from Xfinity Comcast, so we'll see how it goes! Luckily, the installer showed up within the time slot and he was able to get everything hooked up! 

After school I took Theo to PT and then to The Legacy Ranch to see Sherman and his friends. Theo had quite a few seizures while he was riding today. We decided to cut his lesson a little short just to be careful.

[Seizure on Sherman]

Theo had 12 observable seizures today.

Wednesday, March 12th:

Theo went to school today, but I picked him up early so we could go see Dr. Valerie at Bite Sized Pediatric Dentistry. 

The team at Bite Sized are so great, but Theo has a severe oral aversion, so he really struggles. 

They cleaned Theo’s teeth and checked his front tooth that has been loose for almost a year now. Dr. Valerie said that it is wedged in there because of the two permanent teeth that are coming in. She said it will fall out on it’s own in due time. She also mentioned that The has plaque built up on his back teeth, but that is actually not a bad thing for kids that don’t eat orally because it forms a buffer. Dr. Valerie did say there is a possibility that he will have to have some teeth pulled to make room for others. She asked if we had an MRI or anything coming up next year that would require Theo to be under anesthesia and I told her that IR at Lurie’s wanted to to an MRI and angiogram in 2026. She said they could coordinate with Lurie’s dental team and get Theo’s teeth work done at the same time. That would be great!

That afternoon Theo had feeding/speech therapy with Ms. Jen. We decided since Theo had a rough time at the dentist that we would just color and play with Ms. Jen.

That night I had a three hour long Zoom with my amazing travel agent, Christina! She's so helpful and amazing! I can't believe our trip is less than a month away!

Theo had six observable seizures today.

Thursday, March 13th:

After Theo got to school I received a message from Ms. Jess. The magnet used to activate Theo's VNS wasn't attached to his wheelchair like it always is. Ugh! I took it off yesterday when I used it and forgot to put it back! I went to the school to deliver the magnet and I had a nice chat with Ms. Jess, Nurse Brad, and Ms. Kate about Theo's seizures. They had notice that they Theo's seizures were changing. I told them I had noticed that too and I had already reached out to his Epilepsy Specialists. They were waiting on the results of Theo's bloodwork before they add another medication to his regime. 

After I left the school I went to the bank to cash two bonds that my parents had gotten me when I was a kid. They mature after 30 years, so it was time to cash them in!

Good info about what's going on with the Department of Education:

Fun art from Theo:

After school I took Theo to OT. 

I set my alarm for 2:00 AM, so I could get up and see the lunar eclipse. I woke up with a migraine at 1:50 AM. I took some meds and headed outside to check out the moon. 

And this is what I saw! Kidding! 😁 The earth is not flat.

The moon was very red! It was really cool to see!

Theo had 10 observable seizures today.

Friday, March 14th:

Theo went to school and they got to spend some time outside because it was a beautiful day! 

I had a meeting with the school to discuss adding an LPN to Theo's team at the school. The school admins told me that they didn't believe he needed an LPN at school with him, but they would be fine if we sent one. 

Theo started a new formula today AND a new seizure medication, Zonisamide. I hope it helps!

After Theo went to bed, I had a Zoom with my brothers to talk about our upcoming trip. It went really well and we are all very excited!

That night we had a threat of severe weather. I kept my eye on the radar and kept the TV tuned to the local news. 

We made it! There was no damage here even though there were six tornadoes (EF-0's and EF-1's) in the area.

Theo had 16 observable seizures today.

Weekend:

Of course, it snowed after the warm severe storms moved out! Typical spring weather in the midwest!

Since it was a chilly weekend, we stayed inside. Theo worked hard on his tummy time!

[Midline! So proud of him!]

[Hemihyperplasia on display]

He indicated that he was all done with tummy time. So I told him he could be done if he could figure out how to get out of the bean bag. He did pretty well!

I moved a bunch of my stuff to pack into the guest bedroom, so I could have more space. This is what I am planning on taking:

I love the bag that grows!

Pretty cool, huh?

Josh in Alaska:

Josh is enjoying his time on the dayshift. He gets to see more wild animals, but he misses the northern lights.

[The red foxes hunt the Arctic foxes]

They had a pretty big storm up there that shut down work for a couple of days. The snow drifts were pretty intense!

Only two weeks to go!

McEvilly Road Town Hall

Monday, March 3rd:

It's Casimir Pulaski Day! Every year it sneaks up on me 🙂

Theo didn't have school today, so we hung out at home until we went and saw Ms. Laura for OT.

Tuesday, March 4th:

Theo went to school on the bus and I headed out to run a bunch of errands. First, I went and picked up our Disney Park Bucket List shirts. I've been working with a local lady since September of last year to get these just right! She also made our Disney shirts for our family trip a few years ago, so I knew she would do a great job. I love how they turned out! Luke and I are going to cross four Parks off our list during this trip. That just leaves two (Paris)!

[Front]

[Icons from the 12 Disney Parks]

After school I took Theo to PT and then to The Legacy Ranch for horseback riding lessons with Ms. Kaylin and Sherman.

After I put Theo to bed I had a meeting with my business partners. After a lot of hard work, it looks like things are finally moving forward!

Theo had seven observable seizures today.

Wednesday, March 5th:

This bunny was sitting in the same place for a few hours this morning. I think she may be getting ready for babies! Hopefully she won't put her nest there, but I'll keep checking. We don't want to have any issues with the lawnmower. 

I sent Theo to school with some oat milk chocolate pudding. Ms. Jess said that he seemed to like it!

After Theo got home I put him down for a nap and then I jumped on the phone for another work meeting. Once we finally get things up and running I'll be able to fill you in on my newest business venture! 

That afternoon Theo had therapy with Ms. Jen and Ms. Jeannine. He could barely contain his excitement to see them! It was adorable!

That evening I went to an Open House at the Village Hall. Remember back in November 2021 and January 2022 when I went to a couple of Village meetings about that dangerous intersection? Well, after giving me the runaround for a few months they finally told me that the Village of Minooka doesn't have jurisdiction over that intersection since it is on a County Line. I was told to reach out to all the other entities and see if they would be on board with any modifications. After reaching out to Grundy County, Will County, the Channahon Township, and a few others, I figured out what was going on. They all told me that the Village of Minooka had jurisdiction over that intersection and they were sending me on a wild goose chase. I reached out again to the Village and they told me they have no plans to put in a stop sign. Period. Well, I tried.

Flash forward to a few days ago, I received an email about an Open House at the Village Hall. I was really excited when I saw that it was not just about the dangerous intersection, but the entire road! Ms. Jess came over to watch Theo, so I could go to the meeting. I talked with a few engineers and there was a pretty good turnout from the public. The plan is to put in two traffic lights (one will be at my intersection), widen the road to three lanes (so there is a turning lane), AND fix the grade so the hill isn't so steep (which would help with the blind turn).

I was so happy about the plans that I left a nice comment in the comment box 🙂

The only issue is this is just the first phase and construction won't start until at least 2027. BUT at least they are looking into it! YAY!

Ms. Jess and Theo had fun together while I was gone 😊

Theo had eight observable seizures today.

Thursday, March 6th:

Theo went to school while I went to the dentist, had a call with our Case Manager at Cigna Insurance, and got my allergy shots. It wasn't as bad as it sounds! There were no issues at the dentist and I've been getting three shots in my arms weekly for the last few years. Good thing I'm not afraid of needles! Speaking of needles, I'm donating blood on Monday - gotta start taking my iron 👍🏻👍🏻

After school Theo and I went to see Ms. Laura for OT. Every time we roll into the clinic Theo yells really loud to let everyone know he's there. He just can't help it! He's so excited!

Theo had five observable seizures today.

Friday, March 7th:

After I put Theo on the bus I waited around the house because AT&T was scheduled to come between 8:00 AM and noon to hook up our fiber internet. At 11:30 AM I received a text telling me that they would be there at 12:30 PM. That wasn't going to work since I had a meeting with Theo's school speech therapist at 1:00 PM at the school. 

As I was driving to the school I received a call from Theresa at DSCC. She told me that Theo's application has been accepted and he qualifies for Medicaid and other services through their program! I am so excited! He qualified for 58 hours of LPN care a week and 336 hours of respire care a year. What a huge relief! I can't believe after trying for 7.5 years Theo is finally going to get Medicaid! I have a call with a few people at DSCC next week, so I'll learn more then!

After my meeting with Theo's school speech therapist (she showed me how to use Theo's eye gaze wheelchair mount), we went to see Ms. Cody for PT.

Theo had 14 observable seizures today.

Weekend:

I had to take Theo to get labs done for his Epilepsy Specialist and for the Developmental Specialist. Luckily, he had a great nurse and she got him on the first try. Poor guy! 

That evening I went to see Sweeney Todd at the Coal City High School with Ms. Laura. It was fantastic and we had a great time even though it was really dark and kinda scary! The high schoolers always do a fantastic job with their musicals and plays!

Theo was pretty emotional on Sunday. I blame "Spring Forward!"

[Real tears]

[He's okay!]

Josh is working hard up on the North Slope. When he went back up there he was made the Night Lead. But then the Day Lead left and he had to cover both shifts for a while. He was working LONG days! Luckily, they got another guy up there that can cover the night shift, so Josh can focus on the day guys.

It was foggy and very cold, so Josh's beard froze! He reminded me of the Packer Frozen Tundra guy! 🥶🥶

Can't wait for him to be home on March 29th!