Here I am: 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

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.