This is Halloweenn

Monday, October 28th:

I sent Theo off to school and then headed to my eye doctor appointment. I don't remember the last time I went to the eye doctor, but my PCP said I should get them checked just in case they are the cause of my migraines.

The technician had me sit at a bunch of fancy machines which I assumed took pictures of different parts of my eyes. The doctor then came in and asked me why I was there. I told him I was getting migraines more frequently and my PCP thought it could be my eyes. He then pulled up all the pictures and went through all of them. He said he didn't see any concerns! He then brought over the Phoropter (which I recognize) and had me look at a screen across the room. He made the letter different sizes and asked me if they were blurry and if I could read them. He made the letters super tiny and was impressed that I could read them. He then switched back and forth between a few prescriptions and asked me which one looked clearer. Sometimes I couldn't tell. He then got out a bright red light and asked me where it was. After a few more test he concluded that I have great eyes and they are not the cause of my migraines. He asked me if I have any troubles driving at night. I told him that if I'm a little tired the lights from other cars flare and bother me. He said he could prescribe me a small prescription for that, but he didn't think it was necessary. So, yay! No eye problems here!

Theo had a great day at school!

After Theo got home I took him to OT with Ms. Laura.

Tuesday, October 29th:

Theo went to school, Josh went to work up by the airport, and I worked in the basement. After school I took Theo to PT with Ms. Cody and then we went and saw Sherman (and friends) at The Legacy Ranch.

Sherman was dressed up for Halloween!

Kaylin took away one of Theo's cushion's and encouraged him to lift his head up and use his arms. He did great! 

Wednesday, October 30th:

Theo lost his second tooth this morning! I noticed a tiny bit of blood while I was brushing his teeth. I couldn't find the baby tooth though.

After school Theo and I zoomed with Ms. Jen and Ms. Jeannine. Theo was being VERY protective of his mouth. He lost a tooth, threw up muiltiple times a day for over a week while he was sick, was struggling with acid reflux, and was very gaggy from his post-nasal drip. This poor kid can't catch a break.

That night the Dodgers won the World Series! YAY! 

My dad grew up in LA, so he is a big Dodgers fan. I'm more of an Angels fan, but I root for both since they are in different leagues 😁

Thursday, October 31st: HALLOWEEN!

Happy Halloween from our Mandrake!

[I'm pretty sure he's rolling his eyes]

[Classic!]

I sent these instructions to Theo's school:

At school they went trick-or-treating and Theo came home with a lot of candy!

Ms. Jess and the rest of the aid dressed up as Jack Hartmann, who is a famous kid song singer on YouTube. Apparently Theo's class LOVES him!

[Little kid Jack Hartmann!]

Theo had an early out day, so he got home early and went down for a nap before we went to see Ms. Laura.

We got home at 3:30 PM and I finished getting everything ready for the trick-or-treaters! Last year we had over 250 kids and that was during a snow storm, so I was sure we would have more kids this year. I was prepared with four baskets of candy and some glow sticks for kids with allergies. 

I kept track of how many kids came by and I was shocked that our numbers were still pretty low at 5:00 PM. I had the front door open so I could see when the kids were coming, but I noticed that kids would start coming towards our house and then they would start running somewhere else! This happened over and over again! What was going on?! Finally a couple of older girls came to our house and they were holding walking tacos. They said our neighbors were passing them out! So the kids were skipping our house and heading straight for the good food. UGH! I guess next year we are going to get a cotton candy machine or something!

We ended the night with only 150 kids stopping by. I was left with two baskets full of candy. Luckily, a lady down the street posted in the local mom's FB page that she was collecting candy to donate to the troops. I put the candy in bags and made plans to drop it off first thing in the morning!

Friday, November 1st:

Today I signed a contract to become a minority owner in another small business. I can't say much about it right now, but I am excited!

After school I took Theo to PT with Ms. Cody and Ms. Becca.

Weekend:

We spent the weekend relaxing, watching sports, and working on new adventures!

When do you put up your Christmas decorations? I still have my fall decor up, so I usually wait until it gets a little colder - maybe the middle of November?

[How wild is this?!]

Josh got some new clothes for Alaska! They are rated to -60, so I think he'll be warm enough! 🥶🥶

Update on Projects: US Access Board, Sami's Law, and VOGM Walk

US ACCESS BOARD:

The US Access Board meets only a few times a year and Changing Spaces really wanted to get "Adult Changing Tables" on their agenda. So, we started a letter writing campaign!

Here's some info about who the US Access Board is and what they do:

If we can get the US Access Board to rule that adult-sized changing stations should be put unto public restrooms, it would become a mandated accessibility feature under federal guidelines (like ramps, elevators, and accessible restrooms). That would be HUGE!

We posted all over social media and we got so many people to send in letters that the US Access Board responded!

They told us that our request wasn't successful for the October meeting. HOWEVER, they will take our input into consideration and they will discuss changing tables at their next closed meeting. I want to thank everyone who sent in letters! We really appreciate your help!

TRAVEL:

The Chicago Mayor's Office and the CDA announced a new improvement project (#ElevateT3) for O’Hare Terminal 3 in April. "This project will upgrade passenger amenities, improve security screening and airport operations, and expand accessibility for passengers with disabilities at Terminal 3."

I reached out to the ADA Coordinator who oversees O'Hare and Midway to see if they had plans to include a family restroom with a powered, height-adjustable, adult/universal changing table. O'Hare already has a great "Changing Places" restroom in Terminal 1, but they need at least one in each terminal! I'll keep you posted if I hear back from them!

SAMI'S LAW:

IDOT is working on installing adult changing station in a few of their highway rest stops. All of these locations are far to the south. There are two DOT rest areas that are currently closed for refurbishment between us and Peoria (where Theo's hospital and doctors are), but those two places aren't on their list. That's a bummer, but I'm glad they are moving forward with getting some adult changing tables installed.

VOGM Walk Your Way:

The Vein of Galen Malformation Support Network and VOGM.org had their Fifth Annual Walk Your Way Walkathon!

I asked our "PEOPLE FOR THEO" friends and family to print off the race day bib, take a picture, and post that picture on social media (between October 21st and 29th) using the following tags:

#peoplefortheo

#vogm

#vogmwalkyourway

#veinofgalen

#vogmawareness

#AVMAwareness

#veinofgalenmalformation

#veinofgalenaneurysm

We had a lot of people participate by donating and/or posting pictures of them walking for Theo.

All money raised will go to help these amazing VOGM warriors!

Donations from:

Emily Ward & Kids

Jody & Rich Heaton

Tylyn & John Neilson

Karen Turk

Karen Stearns

Mom & Dad

Missy & Tyson & Kids

Thank you so much to everyone for posting pictures and for your very generous donations! I really do appreciate the love and support!

Big Amtryke & Harry Potter in Coal City

Josh picked me up from the airport on Tuesday, October 22nd while my parents took Theo to his lesson with Sherman.

Theo was feeling much better and while he was at school the next day my dad and I went to Home Depot and bought some mums. It's officially autumn now, right?!

[Theo's art]

I hate the fact that I wasn't aware of the need for adult changing tables until my child needed them. I don't want that to happen again. I want to be aware of things before they personally impact me. So, I decided to sign up to be a bone marrow donor. I don't know anyone personally who needs me, but I'm not going to wait until it personally impacts me before I care and take action. I applied online and DKMS sent me a cheek swab kit. If there is someone in need AND I am a match, they will call me in for a donation.

My parents left a couple of days after I got home. It was so nice to spend a few days with them and I am so grateful that they came to watch Theo and keep Josh company while I was gone. We invited them to come celebrate Christmas with us, so we'll see them again in December!

Theo asked for something sour at school and they gave him a sour straw. Ms. Jess said he liked it! 

I told Ms. Jen (Theo's feeding therapist) about it and she suggested that I make a lemon sugar mix that we can put on a straw. I also made a cinnamon sugar mix.

We put the sugar mixes on a straw and gave it to Theo. He was not into it. 

I even had Josh eat some so Theo would know it was delicious. But Theo didn't care. He was NOT happy with me.

[Ms Jess and Theo playing in the leaves]

On Friday night (October 25th) we went to an AMBUCS event where a big group of special kids were gifted Amtrykes. Back in December 2019 Theo was gifted his first Amtryke. 

[Look at my little baby!]

[July 2020]

When the kids outgrow the trykes you donate them back and then they build you another one. Theo outgrew his during the pandemic and due to supply issues it took a few years for him to get a new tryke. But that's okay! We are so grateful and excited that he was chosen to get a new one!

Theo's school PT, Ms. Vicki, helped Theo and the other kids get their trykes! Thanks so much to Ms. Vicki and the rest of the Grundy Area AMBUCS volunteers! 

On Friday night the World Series started. It's the LA Dodgers vs the NY Yankees. My dad grew up in LA so he's a big fan, so we are too!

[I am glad I'm not in LA right now!]

On Sunday (October 27th) I went and saw Harry Potter and the Cursed Child at the Coal City High School. I wasn't a huge fan of the script when I read it back in 2016, but the Coal City High School ALWAYS puts on a good show. Did you know that High School's are not allowed to perform plays or musicals while they are currently on Broadway? They have to get special permission directly from Broadway, so they could do the performance. Pretty wild that a small town in IL has such a great reputation that Broadway would give them permission to perform the play! Ms. Laura, Theo's OT, invited me to go with her and I am so glad that she did! The students did a great job and I really enjoyed the show! I can't wait to hear what musical they will be doing in the Spring!