Severe Weather Season is Here

Monday, March 9th:

After Theo and Stephanie headed off to school I went to donate blood. My iron levels were high enough for a "Power Red" double donation, so that was great news! 

After school Ms. Laura and Ms. Becca came over for OT and PT. 

Tuesday, March 10th:

Today was a strange day. It was 70 degrees and super muggy. We knew we may be in for a rough afternoon/night. For the last few days they were projecting that we had a 10% chance of tornados and hail.

While Theo and Nurse Stephanie were at school I attended a Zoom with the IL Secretary of State Disability Liaison. It was very interesting and I learned a few interesting things.

Please, please do not park in the hash marks next to a handicap parking spot. Even if you have a handicap plate or placard. It is illegal and hurts those of us who need the hash marks to unload wheelchairs. 

By the afternoon they had upgraded us to 15% chance of tornados and strong storms. 

After Theo and Nurse Stephanie got home I reached out to The Legacy Ranch and they decided to cancel afternoon lessons due to the storms. I thought that was a great idea! I also sent Nurse Stephanie home early.

Around 4:30 PM the storms started and around 5:30 PM, when we would have been coming home from Shermans, there were multiple large storms in the area.

Luckily for us the super cells that dropped a lot of hail stayed to our north and the super cell that contained an EF3 tornado stayed to our south. That tornado killed three people, dropped record breaking hail, and caused a lot of damage. 

We had some intense thunderstorms with wind and lightning, but no damage. I think we are in for a long and intense severe weather season.

Today is also the 100th anniversary of Winnie the Pooh! I love Pooh!

[My sweet boy!]

Wednesday, March 11th:

Theo and Nurse Stephanie went to school while Josh and I took the van to the repair shop. We got it repaired a few months ago after we were bumped by a semi on the freeway and the panel that they replaced cracked. Hopefully they will be able to repair it quickly!

My parents have left New Zealand and are now in Tasmania! They only have a few ports in Australia before they disembark in Sydney.

That afternoon Theo had feeding/speech with Ms. Jen. Theo used his eye gaze and was able to communicate with us really well.

Thursday, March 12th:

Did you know?

Just because the ADA was passed in July 1990 that doesn't mean that the fight is over. There are still people out there who are fighting to have access to these rights!

Speaking of disability rights:

Round 2!! The bill has been updated and will be presented before the Human Services Committee on Thursday, March 19th at 8:00 AM. We need witness slips AGAIN (thanks to all of you who submitted them last time). PLEASE submit a new witness slip even if you have already done so in the past and see below for instructions on how to submit a written statement. AND IT DOESN'T MATTER IF YOU DON'T LIVE IN ILLINOIS! Thank you!

We have a huge favor to ask and it'll take just a few minutes of your time! PROMISE! We have been fighting for accessibility for the disabled community for a few years now. Two years ago we were able to get a bill passed (Sami's Law) and now we are trying to amend it. This bill will help us reach our goal of having a powered, height adjustable, universal changing table in all large, accessible buildings across the state. As the bill moves through the official process to become a law, there are times when the Representatives and Senators want to hear from us.

Right now they are looking for witness slips. The law makers just want to see how much interest there is in this bill. All I need you to do is click below and follow these instructions. You don't have to talk to anyone or put in any comments if you don't want to.

Click here

Go to "Identification"

-Fill out your name, address, email, and phone number.

-Fill out "Firm/Business" and "Title" - if you don't have one put NA

Go down to "Position"

-Click on "Add Legislation" and select "Original Bill"

-Click on "Add Position" and select "Proponent"

-Click "Add Position" in the Blue Box

Go to "Testimony"

-Click "Record of Appearance Only"

Agree to the ILGA Terms of Agreement, Prove you are not a robot, and then click "Submit Witness Slip." If it doesn't move to the next page scroll back up and look for red lettering that indicates things you need to change/update.

Please make sure you click that you support the bill ("proponent"). I can see who sends in the slips, so please don't send in one in opposition!

If you would like to submit a written statement please select "Written Statement Filed" under "Testimony" and then email your statement to

humanservicescommittee@hds.ilga.gov

Thank you! You are done and are on record to support legislation that will make a difference to so many disabled individuals! Thank you all for your support!

[Theo's art project]

Friday, March 13th:

Theo had another great day at school with Nurse Stephanie.

After school Ms. Becca came over for PT. We put Theo in his KidWalk and Becca made some suggestions on things we can do with Theo while he's standing there. Theo is so strong when he wants to be!

Weekend:

Milto came over on Saturday to hang out with Theo. Josh and I went to lunch and then to a bakery to get some pie for Pi Day! Happy 3.14 Day!

That night I went to see Frozen at the Coal City High School. As always, the students did an amazing job! 

[Truth!]

First SEPAC Meeting & My New Boots

Monday, March 2nd: 

Theo didn't have school due to Casimir Pulaski Day (something I have to Google every year). So he got to stay at home with Nurse Stephanie. That afternoon Ms. Becca and Ms. Laura came over for PT and OT. 

While we are hanging out at home, my parents are enjoying their time in New Zealand! They aren't huge Lord of the Rings or Hobbit fans, BUT they loved visiting Hobbiton! 

Tuesday, March 3rd:

Theo and Nurse Stephanie headed off to school while I went to run errands. I decided that I need to wear my hiking boots as much as possible, so I can break them in before December. 

[Aren't the cute?!]

[Theo wearing his glasses and standing in his stander at school]

We had an easy day after school since it was our break week from Sherman. We'll see him and Ms. Kaylin next week for the start of our next eight week session.

Wednesday, March 4th:

Today was a busy day! Theo and Ms. Jess went to school while I worked on getting ready for two meetings I had later. Josh went to his weekly golf lesson, but his back has been hurting, so it didn't go very well.

That evening I went to the launch of SEPAC (Special Education Parent Advisory Committee) for Theo's school district. Navigating IEPs and the special needs world can be really hard and confusing. So the district is hoping to get a committee of parents together who can help new IEP parents navigate the process. There was a really good turnout and I hope I can participate in the future!

After I got home I jumped on a meeting with my Northern Integrity partners. We went over the budget and some projections that I had made for the year. This will be our first full year with three full time employees (last year we had two guys who worked for 4 months). So, we should have a great year!

Thursday, March 5th:

Theo had a great day at school with Nurse Stephanie. He wore his glasses and participated in class!

Theo doesn't get in his stander as much as I'd like when he is at home, but when he does, he's a pro!

Friday, March 6th:

Josh and I picked up Theo and Nurse Stephanie from school today. We had a few boxes of items to donate to the school, so we went at the end of the day to drop them off. It was nice to see Nurse Brad and Ms. Kate and a few of our other friends! Some days I really miss picking Theo up from school. It gave me a chance to see what was going on in his classroom, but having extra alone time at home is also really nice 😊

After school Ms. Becca came over for PT. We had increased Theo's meds again, so we figured he would be tired, but he powered through!

Weekend:

Ms. Jess came over to hang out with Theo while Josh and I went to brunch and to see Hoppers! Brunch was delicious and the movie was cute!

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]