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]