Orthopedic Surgeon, Little Lobbyist, and Flowers

Monday, May 11th:

Theo and Nurse Milto headed off to school while Josh went to work in the field and I worked in the basement office. 

Theo had a great day at school! He's been very chatty lately and had no problem playing with his cool whip during iPad time.

After school Theo had OT and PT with Ms Laura and Ms Becca. He loves them so much and works hard for them!

That night the Lakers had their final game of the season. I'm surprised they didn't get swept in the first round, so I'm proud of our guys! They went down to the reigning champs and the team who are favored to win again this year. Now the questions around LeBron start. Here's what I think: he'll do a final year with the Lakers, and then he'll go to the Cavs, and leave half way through the season and go to Miami, AND THEN he'll go back to the Cavs for a real final year 🙃

Thanks for anther fun year!

Tuesday, May 12th:

Theo headed off to school with Milto while Josh and I went to work. After school a nurse from Maxim came by to check in and make sure we didn't need anything.

Later we went to The Legacy Ranch to see Sherman and his friends!

Wednesday, May 13th:

Josh, Theo, and I made the long (and expensive drive) to Peoria to see Theo's Orthopedic Surgeon. Theo had an x-ray of his hips and spine and then we went to see the doctor. Dr. Akeson was happy to see that Theo’s spine was looking really good and his hips look great too! He told us to keep stretching Theo and focus on him being in the stander. He will send over an order for new AFOs and SMOs to Hanger and he is going to send over an order for new molded seats to NuMotion. We will see him in a year for a followup, but Dr. Akeson said we won’t need to do x-rays at that time. YAY!

After Theo's appointment we went to the Tricentenial Playground at Glen Oak Park. I was so happy to see that the bathrooms were finished AND they had put in a powered, height adjustable, adult sized changing table like they said they would!

Theo went on the swing and took a quick nap while I got some pictures.

I love how accessible this park is!

After playing at the park we made the long drive back home.

Thursday, May 14th:

Theo and Milto went back to school today while I had a Zoom call with s.e., the Communications Director at Little Lobbyists. We chatted for about an hour and it was a lot of fun! s.e. asked me all about Theo, his journey, and our family. s.e. wrote up an article about us and it has been published on their website. Check it out here!

I also heard from Mel with the Little Lobbyists. She wants Changing Spaces Campaign to have a booth at their upcoming summit in August! I am so excited! I reached out to my fellow leads and they gave me a lot of tips on how to host a booth. And my friend Sarah, who is the lead in WI, may be able to come down and sit at the table with me! I've already started ordering SWAG from Vista Print to pass out! 

Friday, May 15th:

Happy birthday to my favorite person Josh! We love you so much and hope you have a fantastic day!

Theo headed off to school with Milto and after school we had a visit from our case worker at DSCC.

Weekend:

On Saturday we went to a picnic at a park in Minooka. Ms. Jess' other job was hosting and she invited us to stop by. We got hot dogs and chips and then Theo went on the swing! AND it was Ms. Jess' birthday on Friday (same as Josh), so we got to wish her a happy late birthday!

[Jess, Theo, and Milto]

While we were giving Theo some food pouch through his tube, one of the valves popped open and sprayed everywhere! The TV, the window, the ceiling! Good thing I'm tall!

Josh went and got some flowers for all of our planters! I am excited to take care of them this season!

[Before]

Josh also got some new path lights. They look so much better than our old ones that were glass and kept breaking!

Farmers Market Season

Monday, May 4th:

The second round of the NBA Postseason starts tonight! I'm surprised that the Lakers made it out of the first round and I hope they can capitalize on the momentum. But we are up against the defending Champions though, so I'm just hoping we don't get swept!

Happy Star Wars Day! May the Force be with you!

Since it is teacher and nurse appreciation week I decided to get four dozen Bundtinis for the amazing people at Theo's school. I dropped them off, said hi to everyone, and took Theo and Nurse Stephanie home.

That afternoon Theo had PT and OT at home.

[Theo in his stander - gotta have peek-a-boo barn AND Bluey!]

That night we had some pretty intense thunderstorms! At one point it was raining so hard that I couldn't see the house across the street!

We had a nice little pool form right in from of our rain chain and the street was flowing like a river! Luckily, we didn't have any flooding issues in our house.

Tuesday, May 5th:

Theo and Nurse Stephanie went to school while I got ready for an early Zoom meeting with a member of the Little Lobbyist group. 

[Theo - My hipster child]

Last month I sent in Theo's story to the Little Lobbyist group and I didn't hear back from them. I decided to reach out and see if they got what I had sent in. They did and they wanted to meet with me! 

Today I met with a nice lady named Mel. She told me all about the Little Lobbyist and I told her even though I was very busy with work and Changing Spaces Campaign, I really wanted to be involved if they would have me. She told me about a Family Advocacy Summit that they have coming up this summer in Chicago and that Theo and I should attend it we can. 

After we chatted, Mel reached out to s.e. the Communications Director. s.e. reached out to me and we set up a meeting for next week!

After my Zoom with Mel, I jumped on a Zoom with the founders of the Vein of Galen Malformation Foundation. They talked to a group of us about hosting a Santa Photo shoot in order to raise money for the foundation. I love the idea, but I told them I couldn't plan one this year because I have Sami's Law to focus on right now, the Little Lobbyist to focus on this summer, and we are going to be in Africa in December. But I am more than happy to support whoever is able to host the photo shoot in this area!

Speaking of Sami's Law... we got a sponsor! Senator Great news! State Senator Meg Loughran Cappel has become the Chief Senate Sponsor of HB 4379 (Adult Changing Tables / Sami's Law)! I talked to her Chief of Staff who informed me that the Senator will reach out to me next week and we can go over a plan.

Senator Cappel played a large role in getting an inclusive playground put in at the Inwood park in Joliet. They won't have powered, height adjustable, adult changing tables at the park when it opens, but maybe we can get one installed in the future.

After school we went to The Legacy Ranch to see Sherman and his friends. Ms. Kaylin was out of town last week and Theo made her pay this week! He would NOT sit up on his own (even though he can), so eventually Ms. Kaylin had to ride with him. This child can be SOOO stubborn sometimes!

Wednesday, May 6th:

Theo and Ms. Jess went to school while I worked at home.

I came across this post on Facebook and it made me so mad. This is why we can't have nice things because they get vandalized! The powered, height adjustable, adult changing table at the Coal City park was vandalized and it took TWO years to fix. And now there are kids vandalizing ADA picnic tables at the Mokena Park. Come on guys!

A few hours after this was posted one of the teens turned himself in, so the post was removed. I am glad that he is owning up to what he did.

When we found out that the Lakers would be playing in OKC I reached out to Luke to see if he wanted to go to a game with me. He could fly into the Chicago from SLC and we could road trip to OK (it's only 11 hours from here!). Tickets to the Playoff games were surprisingly cheap, so I started looking at rental cars and places for us to stay. I told him we could go to the game on Tuesday, go to Arkansas on Wednesday, and then go to Game 2 on Thursday. Oklahoma and Arkansas are my last two states to visit, so this trip would be a multipurpose one! Unfortunately, flights were just way too expensive right now, so we decided not to go. That's a bummer because these two seats were empty during both games. I think they were meant to be ours. It's okay! Next time! 😁

Thursday, May 7th:

Nurse Stephanie left on a three week vacation last night (which we knew about months ago), so Theo went to school without a nurse today. Luckily, Milto and Jess are able to take most of Nurse Stephanies hours, but there are a couple of days that he will be at school by himself. But not to worry! Nurse Brad is at school and will be there to help Theo!

Friday, May 8th:

Happy 15th Birthday Brodee! I can't believe he is already 15! We got him a cool remote control car and he and his friends had a fun night bowling!

Theo went to school by himself again today and after school we just relaxed since PT got cancelled. 

[Theo was not happy to give me the flowers he made me for Mother's Day]

On Friday night I "beat" Mario Odyssey. It was such a fun game and I look forward to completing the entire thing and getting all 999 moons!

Weekend:

On Saturday, Ms. Jess came over to watch Theo. We went to the Morris Farmers Market and it was so fun! There are a ton of booths and we got some delicious things!

After the Farmers Market we went to the The Hope Helps All Inclusive Playground in Coal City. I wanted to make sure the changing table was still broken before I started calling the city again. I was pleasantly surprised to find that the table was fixed! YAY! It only took two years, but YAY!

[Theo loves to swing]

We let Theo swing for a while, then we changed him, and headed home. 

That afternoon we went to the new park at Inwood in Joliet. It was very busy! But it was really cool! They had a lot of accessible things!

Of course Theo wanted to swing!

I checked out the bathrooms even though I knew they wouldn't be accessible. They aren't, but hopefully someday they will be!

Mother's Day was on Sunday. I have such mixed feelings about Mother's Day, so it's hard for me. But I want to wish my amazing mom a happy Mother's Day! I love and appreciate her so much!

[Mom at Hobbiton!]

That night we cut Theo's hair! I love it long, but it was getting harder to comb and I'm afraid he's going to overheat during the summer. So it was time for a cut!

So handsome!