Polar Vortex & Garage Lift

Monday, January 20th:

Today it was extremely cold, Donald Trump was inaugurated as the 47th President, and it was Martin Luther King Jr. Day.

We ventured out a bit when we went to OT with Ms. Laura. The rest of the day we hung out at home and did some activities.

We are going back to food play for now. Theo CAN eat, he just WON'T. It's a control thing and it needs to be his idea. Hopefully he will want to feed himself at some point. 

[Only kid I know that would be mad to be snacking on Cool Whip]

Botox Day 7 - Neutral 

Botox Day 7 - Eyebrows raised

Botox Day 7 - Scowl

Theo had five observable seizures today.

Tuesday, January 21st:

We received an email last night that school is canceled due to the extreme cold. We also heard from the Legacy Ranch that it was too cold for the horses and riders in the barn, so Sherman was canceled too. 

[Too cold!]

Botox Day 8 - Neutral 

Botox Day 8 - Eyebrows raised

Botox Day 8 - Scowl

At 10:00 AM we jumped on the computer for office hours with Ms. Kate! It was good to see her and talk to her about Theo and his progress. She said that he likes to raise his hand in class and answer questions when she calls on him. She also said that he seems to be much happier, unless Ms. Jess is gone OR the therapists are trying to get him to do something.

Theo had seven observable seizures today.

Wednesday, January 22nd:

Getting a visa for China is a bit complicated. You have to fill out an application online and then visit the Chinese Consulate. I was nervous that I was going to fill out the application incorrectly or I would have a hard time getting an appointment at the Consulate. So I started doing some research and there are agencies out there (don't worry, they are legit) that you pay and they do all the hard work for you. I paid one of these services, fill out the official application on the Chinese Consulate website, and sent the agency my passport. They will visit the Consulate on my behalf, check over my application, and get the Visa for me. 

My only hiccup during the Visa process was getting a picture that was good enough for the application. 

Soooo.... today I went on an adventure to Walgreens. I needed a passport quality photo for my China Visa. I went to Walgreens and got a photo taken. They sent me the digital file and I tried to upload it to the application, BUT the background wasn't white enough. You gotta be kidding me. So, I called Walgreens and talked to the lady that took my photo. She said she could make the background whiter, BUT I would have to come in and return my other photo and buy the new one. Alright. So I went back to Walgreens and bought the photo with the whiter background. After I came home I tried to upload it to my application and held my breath... it worked! YAY!

Luke started his application today too, so hopefully we will both have our Visas in a few weeks *fingers crossed*

After school Theo had feeding/speech therapy with Ms. Jen and Ms. Jeannine Zoomed in.

Theo had nine observable seizures today. 

Thursday, January 23rd:

I sent Theo off to school and then I got to work cleaning out the garage because LifeWay Mobility was coming over to install the garage lift!

Before

Before - I had to move everything away from the door because they are going to build a platform.

The installer came over and worked hard all day. He built the platform and installed most of the lift, but he needed a few more hours to finish. 

In Progress

Theo had 18 observable seizures today including ones that were 60, 73, and 101 seconds long.

Friday, January 24th:

After I sent Theo off to school the LifeWay Mobility installer came back to finish his job. Everything looks great, but we can't use the lift until after the electrician does his part and then the inspector approves it. 

After

Fits with the van!

Theo had 8 observable seizures today including one that was just shy of three minutes.

Saturday, January 25th:

Ms. Jess and her friend, Milto, came over on Saturday to hang out with Theo, while I went to run some errands. Theo had a great time with them!

Also on Saturday, an electrician from LifeWay Mobility came over to do the electrical work for the garage lift. 

I'm glad it's all installed, but we can't use the lift until the Inspector comes and turns it on. I hope it doesn't take too long!

Botox Day 13 - Neutral 

Botox Day 13 - Eyebrows raised 

Botox Day 13 - Scowl

It's been almost two weeks since I got the Botox and it's pretty safe to say it's not my thing. Here are my before and afters:

Why is my right eyebrow so much higher than my left? 🤔 

I don't like having my facial expressions be limited. It just feels kinda strange to me.

[Theo working on food play]

Josh is still doing really well in Alaska! It was actually warmer up there at the beginning of the week than it was down here! Pretty wild! We miss him so much!

I'm so old 🤣🤣

Botox, Sherman, and Josh on the Northern Slope

Monday, January 13th:

We got a new seizure action plan (SAP) for Theo. His Epilepsy Specialist agrees that Theo needs to be sent to the ER only if the Valtoco doesn't bring him out of his focal seizure. She also increased his nighttime Epidiolex dose slightly.

Theo went to school and had a great day. After we went to OT and he had a great session with Ms. Laura.

Theo had 11 observable seizures today.

Tuesday, January 14th:

We woke up Tuesday morning to a nice dusting of snow.  

After I got Theo on the bus I went to Laser Away and got xeomin (botox) injections. They came free with my facial package, so I decided to give them a shot (pun intended)!

Botox Before - Eyebrows raised

Botox Before - Scowl (I have really good scowl lines!)

Botox Before - Neutral

The nurse drew on my face with white chalk and then did the injections. I got three around my eyes (crows feet), five across my eyebrows (scowl lines), and three on my upper forehead (forehead lines). I get shots in my arms weekly for my allergies, but these ones hurt! The poke wasn't too bad, but the injection stung a bit!

Botox After - Neutral

Botox After - Neutral

I bruise really easily and five days later I still have bruises on my forehead and around my right eye. The nurse said I'll see the full effects in two weeks and if I want to keep the results I'll have to get injections every three months. So far I'm thinking I'll pass.

After school we went to PT and then to see Sherman and his friends!

Theo had a bit of a rough ride and kept complaining. I don't know if he was cold or tired or both.

So, Kaylin decided to jump on Sherman behind Theo. She helped hold up his head and they rode Sherman together for the rest of the lesson. I think Theo really liked it!

Theo had 16 observable seizures today including one that was 89 seconds long.

Wednesday, January 15th:

After Theo went to school I went to CMBS for a hot stone massage that my parents got me for Christmas. I've been to CMBS twice before for massages and they were both great, so I was very excited for this! The massage was fantastic and I was very sad when I had to walk back to my van in the very cold 1 degree weather! 

After I got home I got this hilarious text from Ms. Jess:

Oh boy! We gotta teach this child some manners! 

Botox Day 2 - Neutral (and yes, that is a bruise above my eye)

Botox Day 2 - Scowl

Botox Day 2 - Eyebrows Raised

That evening Ms. Jen came over for feeding and speech therapy. Theo tried another one of my pudding drops and he was not into it. Ms. Jess is the only one who can get him to eat, so I'm going to get some tips from her.

Theo had eight observable seizures today including one that was 102 seconds long.

Thursday, January 16th:

Theo headed off to school and I did a few lessons from my Wall Street Finance class. 

Botox Day 3 - Neutral 

Botox Day 3 - Eyebrows Raised

Botox Day 3 - Scowl

After school I took Theo to OT. He was SOOOO excited to see Ms. Laura. He couldn't stop smiling, giggling, and kicking his legs!

After we got home I participated in an online Make-A-Wish Volunteer training Zoom. After the training was over I sent in my official application and signed up for a background check. 

Right after that I attended a Zoom meeting that was put on my The Arc of Illinois. They are inviting various lawmakers to Zooms every week and having an open forum. This week it was Representative Michelle Mussman. She is a big advocate for the Special Needs community and has worked to pass legislation that benefits everyone. I was able to ask her a question, so I asked her if she would be willing to pass legislation about adult changing tables. She said that the budget is tight, but she liked what I had to say and she would definitely consider supporting additional changes to Sami's Law. After we got done chatting the host said that I should consider running for public office since I speak so well and gave a nice presentation of my ideas. I'm flattered. But I have no desire to run for public office. 

After I was done talking to Representative Mussman a lady who was on the Zoom messaged me. She said she knows Renee (Senator Rezin's assistant) and Sami! She said she would love to help further our cause. I sent her an email! YAY for making more connections!

Theo had 11 observable seizures today including one that was 90 seconds long.

Friday, January 17th:

Theo and I were in the garage waiting for the bus to show up (it was VERY cold). I asked him if he was excited to see Ms. Gina (bus driver) and Ms. Karen (bus aid) and he got VERY excited!

He loves to go to school on the bus!

Botox Day 4 - Neutral 

Botox Day 4 - Eyebrows Raised

Botox Day 4 - Scowl

Our bonsai tree is growing a ton, so I had to prune it a bit. I think he's looking very healthy!

After school I took Theo to PT and he was in a very good mood and was so excited to see Ms. Cody!

Theo had 14 observable seizures today including ones that were 90, 68, and 138 seconds long.

Weekend:

At 2:00 AM I woke up with pretty intense tummy issues. I was awake until Theo got up at 7:00 AM. 

Ms. Jess and one of her nursing student friends, Milto, were supposed to come over from Noon to 8:00 PM to watch Theo. But I asked Ms. Jess to come over earlier since I was so tired and she did! I am so lucky to have her! She watched Theo all morning, so I could rest, and then at noon Milto came over and helped her watch Theo. I slept for most of the day and only came out of my room to get a protein shake and some water. I did spy on them once when Ms. Jess was putting Theo to bed. She was reading him a book and it was adorable!

I want to thank Ms. Jess for coming to my rescue and for taking care of Theo! He had such a great time with Ms. Jess and Milto and we are excited for them to come over next Saturday and watch Theo again.

Theo and I stayed inside all weekend in preparation for the insane wind and cold we will be getting.

Did you know that I am really good at predicting who will lose in the NFL Playoffs? It's true. Whoever I root for ends up losing 🤦‍♀️ ... Poor Lions.

How sad is this? Yes, I'm a Angels fan.

Josh is still working hard on the North Slope of Alaska:

He's seen a lot of Arctic foxes and also red foxes! Luckily, no polar bears!

They have unlimited Pibb up there too! Lucky guy!

And of course, he gets to see the beautiful northern lights almost every night!

On January 17th they had their first sunrise! Josh works at night, so it doesn't matter too much to him, but I'm sure the day shift guys are happy!

We are getting the polar vortex this week and it was actually be colder here in IL than it will in Alaska! Wild! Stay warm everyone!