Rare Disease Day & Two Appointments

Josh and I have booked our next adventure! In December we are heading to Africa! We are going trekking to see the endangered Mountain Gorillas and Golden Monkeys in Rwanda, then we’ll spend five days on a safari on the Serengeti and at the Ngorongoro Crater, and then we’ll end the trip with a visit to Victoria Falls. I can't wait!

Monday, February 23rd:

We had a very busy day! Theo and Nurse Stephanie headed off to school where he had group speech therapy, learned about the Traveling Trolls, and he helped Ms. Kate cut and glue items for their US map.

While Theo was at school I had a meeting with Rep. Briel about up Sami's Law update bill. She said they had a lot of pushback from the small business groups and other Representatives due to the renovations provision. She thinks that if we cut that provision out we will have a lot more support.

Since they are taking out the renovations provisions we are going to fight really hard to get a grant program going next year so that money can go to businesses in older buildings that want to add in tables. I asked about witness slips and statements and they said that once the bill gets resubmitted we can have people send in witness slips again and also written statements. And she wants me to come and testify at some point but that will probably be next month.

After school Theo had PT and OT with Ms. Becca and Ms. Laura. Right after therapy, I had a conference call with the owners of Northern Integrity and our accountant to go over taxes. It was a very informative conversation! 

Later that evening I had a book club meeting. We had read 107 Days by Kamala Harris and she was on the Zoom call! It was really cool to hear from her! I have been in this book club for a few years now and we only read books where the authors are alive so that they can come to our meeting. Next we are reading 1929 by Andrew Ross Sorkin. 

AND we booked our next Neilson Family Vacation: 

We are going to Disney World and then on a Disney Cruise in June 2027!

It's going to be so much fun!

Tuesday, February 24th:

Theo and Nurse Stephanie went to school and had a great day! Theo smelled a lot of different smells and he disliked four of them and actually liked three of them!

After school we took Theo to The Legacy Ranch for his lesson with Sherman and Ms. Kaylin. Theo rode Sherman by himself again today and he did great!

Wednesday, February 25th:

Theo had his yearly doctors appointment with Dr. Lin and Nurse Jenna from Neurosurgery today. In the morning Ms. Jess came over to hangout with Theo so I could jump on a call with the district nurse. We had to go over everything that has happened to Theo in the last three years. Luckily, I write everything down so before our meeting I sent her all of my notes and lists. 

After chatting with the district nurse, Theo and I headed to his doctors appointment. We usually get to see Neurosurgery in Ottawa, but that hospital is closing down and they are moving the appointments to Peru. Ugh. Theo doesn't like new places so his anxiety kicked into high gear right when we entered the building. I kept telling him that we were going to see our friend Nurse Jenna and that there would be "no pokes" but he didn't believe me. We saw Nurse Jenna first and told her how Theo's last year had been. She had me sign a release so that they could get the results for Theo's upcoming MRI. We then saw Dr. Lin. He checked Theo's shunt and told us that they'll schedule an x-ray to check the shunt and catheter in a couple of years. Easy peasy! 

Hey look! My parents made it to New Zealand! They are going on a cruise and then heading to Australia. They are going to have so much fun!

Josh has been taking his golf lessons very seriously! He set up a place in the garage were he can practice and he's been going out as much as he can to hit balls at the driving range.

Thursday, February 26th:

Theo had an appointment with his Developmental Specialist in Peoria today. So, we all jumped in the van and headed south. We see Nurse Jennifer every 6 months and she is fantastic! We talked to her for about an hour and she is very happy with how Theo has been doing. She was also very excited about my bill and asked to be updated on the progress. We'll see her again in about 8 months!

Friday, February 27th:

Happy Birthday Pokemon! I still remember playing the Red, Blue, and Yellow versions on my Gameboy, watching the TV show, and collecting Pokemon cards! They just announced that a new game would be coming out soon on the Switch, so they are going strong!

It got up to 60 degrees today, so Theo's class spent some time outside! Theo also helped clean a few of the desks in his class and he really liked holding the spray bottle. 

After school Theo had PT with Ms. Becca. He had a big seizure right before she arrived, so he was a little tired, but he still worked really hard and lasted the full hour!

Weekend:

Josh and I went to REI to look at hiking boots while Ms. Jess and Theo hung out at the house. While I was an archaeologist I went through plenty of great boots, but my last pair got ruined when we had a leak in the Raptor. A few years ago I bought hiking shoes and I've worn those to South America, Europe, and Iceland. They are great shoes, but I need something with a little more ankle support for trekking up the mountains in Rwanda.

[Practicing trekking and looking for Mountain Gorillas]

Now I just need to break them in and get my hiking legs back!

The last day of February is Rare Disease Day. We love any chance to celebrate Theo and how unique he is!

[Some info about one of Theo's rare diseases]

Olympics and Sami Law Update

Monday, February 16th:

Theo didn't have school today, so Stephanie came over and spent the day at home with him. 

I kept checking the ILGA website to see the progress of Sami's Law 2.0. All of a sudden it showed that there was going to be a hearing on Wednesday at 8:00 AM and we needed witness slips. I posted on Facebook and IG, sent emails and text messages, and reached out to everyone I know! In just a matter of hours we had over 200 witness slips!

That afternoon Theo had PT and OT with Ms. Becca and Ms. Laura.

Tuesday, February 17th:

Theo headed off to school where he had a great day! Theo got to choose a book to read and after they read it he used his eye gaze to he say he liked it! He also got iPad time and wore his glasses for that. He also went in the stander for 30 minutes. 

After school we took Theo to The Legacy Ranch for his lessons with Sherman and Ms. Kaylin. They decided that since Theo did so well riding with Ms. Kaylin last week without his neck brace, they would have Theo ride by himself without the pillows or his neck brace. They put a harness around his chest and two of the volunteers helped hold him steady. But Theo held up his head all by himself for the full 30 minute ride. He only stacked a couple of times and he was tired by the end, BUT he did so great!

So proud of my super strong boy!

Wednesday, February 18th:

Theo and Ms. Jess headed off to school and I jumped online to see if I could learn anything about the hearing in Springfield. We did manage to get 261 proponent witness slips and multiple people sent in written statements! There were also seven opponents. Most of those are lobbyist that represent small businesses. It's frustrating because the bill clearly states the size of the buildings that this would impact and it is not going to impact small businesses. But they need to oppose on principal. 

Hours after the hearing I still didn't know how it went, BUT later that day I saw that the bill got a co-sponsor! So, the bill is not dead!

Speaking of the government... please make sure you vote in local elections. They impact you so much more than federal elections.

We finally got the results of Theo's EKG and he was cleared to start a new medication, rufinamide. We started his first dose that night and over the next month we will follow the doctors schedule and slowly increase his dose every week.

Thursday, February 19th:

Josh got himself a little drone so he could take pictures of a yard where some pipe was. He tested it out first in the basement and it worked pretty well. 

After Theo and Stephanie went to school, Josh and I headed to the pipe yard to take pictures. It didn't take long before the light wind swept the drone into a corn field. Luckily, the corn was already down, so after a short walk we found it!

Nurse Stephanie said that Theo did pretty good at school, but he was a little extra tired so he took a long nap. We knew that tiredness was a common side effect with a new seizure medication, so this was expected.

Friday, February 20th:

Theo and Stephanie went off to school and Josh went golfing with some guys from work. Theo had another great day at school, but he was a little tired.

Our garage door motor decided to break. Ugh! But luckily Josh is super handy and he was able to fix it very quickly!

Weekend:

Ms. Jess came over to watch Theo on Saturday. Josh and I went up to Galena to get lunch at Ella's Italian Pub, coffee and matcha at Storybook Cafe, and cookies at Crumbl! It was nice to get out and go on a nice day date with Josh 😍

During the rest of the weekend we watched the Olympics (like we've done every day for the last two weeks) and got ready for a busy upcoming week.

The Olympics were a lot of fun and both the men and the women's hockey teams won GOLD! I love cheering on our athlete's! 

[Lost two teeth and scored one goal!]

[Closing Ceremony]

Can't wait for the Summer Olympics in LA in 2028!

Valentines Day 2026

Monday, February 9th:

Theo and Nurse Stephanie went to school and had a great day! Josh has been working from home, going to meetings, and practicing his golf swing. He signed up for golf lessons and he is really enjoying it so far. I spend most of my day working out, working for my company, and planning our next vacation (more on that later).

After school Theo had OT with Ms. Laura. It was nice to have some one-on-one time with her!

Tuesday, February 10th:

Theo and Nurse Stephanie went to school where they learned about the Northern Great Plains and Theo had physical and occupational therapy.

After school we went to The Legacy Ranch so Theo could have his lesson with Sherman and Ms. Kaylin. Theo did his entire lesson without his neck support! He's come a long way in the last few months!

Wednesday, February 11th:

Theo had a half day at school and Ms. Jess said he did really well! 

While they were at school a guy from a generator company came by. We are applying for a grant for home modifications. One of the things we may be able to get is a home generator since Theo is medically dependent on technology. Another company is coming out on Friday to give us a quote. Hopefully we will be able to get the grant!

After school Ms. Jen came over for feeding/speech therapy. Theo got pretty upset when I asked him if he wanted a snack, so we skipped it today. I showed Jen how much better Theo is doing with his toothbrushing. So we are still moving in the right direction!

Thursday, February 12th:

Theo and Nurse Stephanie went to school and I went to the salon to get a Japanese Head Spa and my hair cut. It was delightful!

I got a message from the place where we got Theo's new glasses letting us know that his glasses were ready to be picked up. We picked up Theo and Nurse Stephanie from school and headed to the clinic. Theo was NOT happy about his new glasses, but they actually fit really well and I'm sure he'll get used to them.

Friday, February 13th:

At school Theo worked on getting all his Valentines Day cards ready to be passed out to his friends.

After school Ms. Becca came over for PT and Theo did really well holding his head up and being super strong!

Weekend:

For Valentines Day Josh and I went to sushi for a lunch date. Josh got me chocolates and I got him a video game. We are pretty boring! ❤️

[Theo's Valentine for Sherman!]

Have you ever heard of Morgan's Wonderland? It's an amazing theme park that a father built for his special needs daughter. All of the rides are accessible! It sounds amazing, but it's in San Antonio, Texas which is pretty far away. BUT it was announced that a similar park called Michael's Wonder World is going to be built in Olathe, Kansas which is much closer to us! How cool is that?! Maybe we can go one day!

Winter Olympics & Super Bowl 2026

Monday, February 2nd:

Happy Groundhog Day!

Josh, Theo, and I made the long drive down to Peoria today, so we could check in with Amanda Allen (APN) with the ENT in Peoria. She checked Theo’s ears and his right ear still has a tube in it. She said as long as there isn’t an infection and it’s not bothering him they will leave it for now. We will see her again in six months!

That afternoon Ms. Laura and Ms. Becca came over for PT and OT. 

Tuesday, February 3rd:

Theo and Nurse Stephanie went to school, Josh went to his first golf lesson, and I attended a Zoom meeting with my fellow Changing Spaces Leads.

After school we took Theo to The Legacy Ranch to see Sherman. Theo rode without his neck brace today and did pretty well, but you could tell he got tired very quickly. It's definitely something to work on!

Wednesday, February 4th:

Theo and Stephanie headed off to school and Josh went to the NICOR office for some meetings. A few hours later I went to Theo's school so I could meeting with his teachers and aids for his IEP meeting. We had a great discussion about Theo and everyone seems very happy with his progress.

After the meeting I went to Theo's class to see his friends, all the aids, and his teacher. I love their little class room!

[How crazy is this?!]

It's Valentines Day next week, so I got these cute cards for Theo to pass out to his friends!

Thursday, February 5th:

I love how I look when I have fake lashes, but they are such a pain to maintain and they are expensive. I talked to my esthetician and she suggested I look into a lash lift and tint. I said let's give it a shot!

[Before]

Essentially, she put a solution on my lashes to curl them and then she dyes them. Kinda wild! The solution smells like the stuff they use for perms and I was having major flashbacks to my childhood!

My lashes are pretty short, but she was able to get some nice lift! I'm excited to see how they look in a couple of days!

Theo's new glasses came today and they are too tight on his head! UGH! Luckily, there is an eye center place right across the street from Theo's school, so we will take him there tomorrow to see if we can find a pair of glasses that will work for him!

Friday, February 6th:

Happy Winter Olympics Opening Ceremony Day!

At school Theo participated in the passing of the torch and also the bobsleds! 

[Theo's friend passing him the torch]

[Theo has the torch!]

[USA USA!]

[Bobsleds!]

[Theo won!]

We picked up Theo and Nurse Stephanie from school (twice in one week!) and headed across the street to the eye center. A super nice lady helped Theo try on some glasses and I think we found a pair that is going to work for him!

That night we watched the Opening Ceremonies of the Winter Olympics! I love the Olympics!

Weekend:

On Saturday Josh and I went to lunch and ran some errands while Theo hung out with Milto. The rest of the day we watched the Olympics. On Sunday we watched some more Olympics and then the Super Bowl. I don't care for either team. I just want to see funny commercials, some movie trailers, and a half time show I can dance to!

"The only thing more powerful than hate is love"