Smoke in Chicago and The Art Institute

Monday, July 13th:

Stephanie came over today and hung out with Theo while Josh and I went to work. The smoke from the wildfires in Canada and Minnesota has reached us here, so we are trying to stay inside as much as we can.

I love our summer garage! It's been taken over by Theo's mobility equipment and Josh's golf stuff!

That afternoon I Ms. Becca and Ms. Laura came over for PT and OT. They gave me some advice about my neck/back and Ms. Laura showed me how to massage the area with a tennis ball. These ladies are super knowledgeable, so I knew they would be able to help!

Tuesday, July 14th:

After Stephanie came over I headed north to run some errands. I got my allergy shots and then went to the Family Vision Developmental Center for my first round of light therapy. I met with Dr. Alia Santoyo-Johnson who is a behavioral optometrist who is a Board Certified Fellow in Light therapy. She ran some test and went over my history and then I did a three minute session of light therapy. Dr. Santoyo-Johnson is going to talk to Dr. Martin and come up with a plan for me moving forward.

That afternoon we went to The Legacy Ranch for Theo's horse back riding therapy. It was still pretty hot, so he was only able to ride the horse for about 15 minutes and then we helped to give the horse a bath.

Wednesday, July 15th:

Theo and I headed down for our six month check up with Dr. Yuan (Pulmonology). He was happy with how Theo was doing and he recommended that we reduce Theo's Dulera to once a day. But he said if Theo starts to struggle then we can go back to twice a day. We've been doing the shake vest and nebulizer twice a day and we definitely want to continue using those. It's either cold/flu season or allergy season around here and those devices come in handy! We will see him again in six months.

Thursday, July 16th:

Nurse Stephanie, Josh, Theo, and I went to smoky Chicago today, so we could go to the Art Institute. Stephanie has never been and we heard there was an adult changing table in there too, but no one had documented it yet. It was our mission to find it AND enjoy the museum!

The museum is old and there are a lot of stairs, but you are able to get through the entire museum in a wheelchair. We ended up going through the ENTIRE museum and it was a lot of fun!

The newest piece of art in the museum is Raqib Shaw's Paradise Lost. It is a 100 foot painting (21 panels) that took the artist 16 years to complete. It is beautiful and very intricate!

Some of my favorite paintings are in the Impressionism Wing. I love seeing Monet's Water Lillies and Stacks of Wheat. I could also spend a lot of time with the Dutch Golden Age and Renaissance paintings. I love a good old Rembrandt, but I mostly love looking at all the babies because it reminds me of one of my favorite YouTube videos by John Green called "Has this artist ever seen a baby?" 😁

Our final stop was the Modern Wing and we went through that pretty quickly. But you gotta make a quick stop to see the Picasso's, even if they aren't my favorite.

On the way out of the museum we visited the Ryan Learning Center where we found a powered, height adjustable, adult sized changing table.

As we were leaving the museum I suggested that we walk over to the Nutella Cafe. It wasn't too far and we weren't going to be outdoors for too long, so I thought it was a reasonable idea.

The smoke was really bad in the city and you could barely see the skyline!

[Nurse Stephanie and Theo with "The Bean"]

We got to the cafe and it was closed! They didn't say why and I was really sad! It was hot and I was really looking forward to a nice cold cup of Nutella ice cream. 

Since we were not able to get the Nutella ice cream, we stopped by Garretts for some popcorn and then got frozen lemonades at a stand by The Bean.

It was a successful day in Chicago! I really love this city!

Friday, July 16th:

I had a meeting with my new friend Mel at the Little Lobbyists today. We are still trying really hard to get a Fall Festival set up at The Legacy Ranch. We discussed a budget and some other logistics. After our meeting I reached out to The Legacy Ranch to get some answers from them. I hope this works out!

Josh went to a golf tournament on July 9th. He is really enjoying his new hobby!

Weekend:

The smoke stayed with us through the weekend and on Saturday we got thunderstorms, which helped a little bit.

I've been watching the Tour de France religiously mostly because I love these two guys:

Tadej Pogačar (in the Yellow jersey) and Jonas Vingegaard (in the KOM jersey) are rivals but also friends. Over the last six years Jonas has won the Tour de France twice and Tadej has won four times. They are so much fun to watch! I always root for Jonas because he is from Denmark, but I love Tadej too. Unfortunately, today Jonas had a bad crash and had to pull out of the race. He was in second place in the GC (Tadej currently leads) before he had to abandon the race during the 15th Stage. Such a bummer! I hope he recovers quickly!

In other sports news, we have been watching the FIFA Men's World Cup for the last month. Unfortunately, every team I have rooted for in the knockout round has lost 🤦‍♀️ BUT the games have been a lot of fun to watch and even Josh has been enjoying a little fútbol, but not enough to pay an insane amount of money to go to the game!

Before the FIFA Men's World Cup Final we went to the local Farmer's Market. It was pretty small, but there was a nice variety of booths. We got some treats and local honey. It's fun to support small local businesses and it's easy when they sell such delicious stuff!

And Spain has won the FIFA Men's World Cup Final! The only time the team I was rooting for actually won! Congrats to Spain! And don't forget, our women's team has won FOUR times and they play again in 2027!

Olmstead Act

Wednesday, July 8th:

The morning after I got home from Ohio, Theo and I made the long drive to Peoria. He had an appointment with Numotion at Easter Seals. We saw Eric Holman and the OT. They did measurements on Theo and Eric adjusted his Zippie. Theo's Orthopedic Surgeon sent in orders for new molded seat cushions and Numotion needed to do an evaluation too or else our insurance wouldn't approve the order. 

After the cushions are approved by insurance we will go back to Numotion and they will put him in the bean bag chair and get the molds made.

A few months after that we will go back and pick up the molded seats.

[I love a good mash-up]

Thursday, July 9th:

Nurse Stephanie came over to hang out with Theo and at about 10:30 a nurse from Maxim came over (they stop by about once a month) to check in on us. A little while later a nice nurse named Patti came over. She was interviewing to replace Stephanie. Patti was really nice and has been a nurse for over 30 years and she recently discovered home health. Her last kiddo had a g-tube and had seizures too. So, she was already very familiar with a kiddo like Theo. After about 45 minutes I had to leave to go donate blood, but I told her she could stay and hang out with Stephanie and Theo if she wanted to and she did.

I headed to the Red Cross for my Power Red donation. Unfortunately, my hemoglobin was too low for a Power Red, so I said I would still do a Whole Blood donation. I got set up and after a few minutes my blood stopped flowing. They asked me if I felt okay or if I had had any caffeine today. I felt great and I had not had any caffeine. Strange. Apparently my vein had collapsed and I was done donating for the day. I still got my Oreo cookies and they put an ice pack on my arm for about 15 minutes. I knew it was going to have a nice bruise, I usually have a bruise from donating, but I knew this one would be worse. Oh well. I'll be back in September to try again!

Friday, July 10th:

Nurse Stephanie came over again and played with Theo while I worked. I love that I can hear them giggling upstairs. I love that Nurse Stephanie plays with Theo and does therapy with him every day. We are going to miss her so much!

[Theo has been moving a lot in his sleep, and he ends up sideways in his bed]

[Bruise is getting worse]

That afternoon Ms. Becca came over for PT.

Weekend:

On Saturday, Theo and I went to the Ace in Lockport to buy a hotdog from the Legacy Ranch. They were doing a fund raiser outside of the store and we wanted to support them.

After Josh got home from work we took Theo for a walk in the new jogging stroller. I wanted Josh to be with me the first time we took it out just in case I had a hard time turning it or if we got stuck somewhere. The jogger has a locked front wheel when it is in jogger mode, so it doesn't turn very easily. But the jogger has large wheels in the back, so if you need to turn it it's easy to pop a wheelie and turn it. Theo was hesitant about his first ride, but as long as we were moving he was happy!

On Sunday I woke up in a panic because my neck, back, and right arm hurt so badly that I couldn't move. I tired to roll over and push myself up, but I could barely move my arms. I cried and called for Josh to help me sit up. For the rest of the day I could barely move. I alternated ice and heat and took a lot of Advil. My neck was a little sore on Saturday, but I have no idea what I did to it. I'm going to ask Theo's PT and OT tomorrow what they think. They are super smart and have seen it all!

Do you know what the Olmstead Act is? If you care about my son and his care then you should really know about this:

People with disabilities are entitled to receive services in their communities, rather than an institution. Unfortunately, the Justice Department disagrees.

Here's the link for the YouTube video mentioned above

250th Birthday in Ohio

On Sunday night I saw that a lady in Grand Rapids, Michigan had listed a jogging stroller for sale for $500. These things are a hot commodity and they go fast once they are listed. And considering the one I had my eye on at the Abilities Expo started at $6000, I thought this was a better option. I reached out and told her I can be there tomorrow with $500 in cash. She said that worked for her!

Monday, June 29th:

After Nurse Stephanie got to the house I headed to Grand Rapids, MI. The drive out wasn't too bad since I had an audio book and some nice snacks. 

After I picked up the jogger I got a call from Josh. He asked me if I could swing by another house in Grand Rapids to pick up a golf club that he wanted. I had to run by the bank to get some more cash, but the extra stop didn't add too much time to my excursion and Josh got a nice golf club for a great deal.

On my way home I went by the town of Holland. I wanted to stop by the Dutch Village Downtown store and check out the area, but it was so busy that I couldn't find parking close to the store. Plus, Michigan was experiencing the same heat wave that we were, so I didn't want to walk around too much.

I drove through Holland and made a note that we should go back there in the spring for a long weekend. They have a tulip farm that would be fun to see along with their adorable downtown area!

On the way home I drove along the coast and stoped at a lookout. On a really clear day you can see downtown Chicago across the water, but it was really HUMID today and there was a layer of mist on the water.

[Lake Michigan]

I hit a ton of traffic on my way home, but it was fine since I didn't have Theo yelling at me from the backseat. Once I got home we set up the jogger and wiped it down. 

Theo was a bit unsure, but I think it's pretty cool!

It came with a wind/rain cover

and also a bug net.

I can't wait for the weather to cool down so we can take it for a spin outside!

[This is so true!]

Tuesday, June 30th:

After our bill passed the ILGA I decided to reach out to the Illinois Council on Developmental Disabilities (ICDD) to see if they had some ideas on how we can get grant money for business who want to install powered, height adjustable, adult changing tables. They wrote back and we set up a Zoom meeting for today. I also invited my friend Deepa to join us. 

Our conversation went really well and they are a great ally! Hopefully we can work together in the future to get some grant money flowing!

That afternoon we went to The Legacy Ranch for Theo's horse back riding lessons. Due to the heat wave it was well over 100 degrees heat index, so it was too hot to ride the horses. So, we gave Ajax a bath! 

That night I was invited to join a Zoom with the founder and the chapter leads from the Little Lobbyists. It was fun to hear them talk about their "birthday parties" (LL just celebrated their 9th birthday) and all the ideas they have for the future.

Wednesday, July 1st: Happy Canada Day!

Theo, Nurse Stephanie, and I went to Hanger so that Theo could get measured for new AFOs and SMOs.

That afternoon Ms Jen came over for feeding/speech therapy and then Josh, Theo, and I went to pick up my rental car.

Thursday, July 2nd:

After Nurse Stephanie arrived I finished packing up my rental car and then started the long drive to Ohio.

I swung by Marilyn's Bakery in Indiana to pick up the 11 pies I had ordered and I made it to Ohio without any problems. That night most of the family came over for taco night. It was fun to see them and some of the neighbors too!

Over the next few days I hung out with the family and celebrated our 250th birthday!

On the 4th of July we went to the local parade and then to Missy and Tyson's new house for a BBQ and fireworks! They have a pool and Tyson always makes the BEST food, so we were well taken care of!

[Missy, Ty, and Hayden decorating their bikes]

[Heading to the parade]

[Cole and his friends in the parade]

[Firetrucks leading the parade]

[Bouncy houses]

[Getting ready for fireworks]

[Tyson's famous pork belly]

[Fireworks on the driveway]

[Clean up!]

We watched a lot of FIFA games, the Tour de France, and then I went to Kings Island with Missy, Brady, Dane, and Cole.

We went on all of the best rides and then went back to Papa and Grandma's house for pie 😋

On Tuesday morning I headed home. Thanks to mom and dad for hosting me and to Missy and Tyson for hosting everyone on Independence Day!