Here I am: 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!