Developmental Specialist Visit

Monday, November 6th:

Theo, Josh, and I drove down to Peoria to meet with Anne, Theo's Developmental Specialist. We haven't seen her since February, so we had A LOT to fill her in on!

When we first arrived she told me that she just signed some paperwork for us. I was confused since I didn't think we needed her to sign anything. But then she asked, "Are you getting a swim spa?!" She said that Make A Wish reached out to her to make sure a Swim Spa would be a good fit for Theo! I know there is still a lot of steps before we physically get the swim spa, but the ball is rolling!

We then talked about everything that has happened since February: hospital stay for pneumonia, VNS surgery, sleep study, medication changes including weans, swim PT, horseback riding lessons, etc. It's been quite a year! 

We then went through all his current doctors and therapists so Anne could make sure he was getting all the care he needs. We then talked about the battles with insurance to get equipment. She keeps sending in paperwork stating that Theo needs equipment, but insurance just denies it. Luckily, we were able to buy some equipment second hand from other special needs families.

She then examined Theo and was happy to see how much more alert he is (since the Clobazam wean). She was so excited to hear about Sherman and Theo's adventures with swimming PT. We made an appointment to see her again in a year, but we know she is just a quick phone call away if we need her sooner!

Theo had five observable seizures today.

Tuesday, November 7th:

The next day, Theo went to school and Josh headed off to work.

Ms. Jess said that Theo has been using his iPad to "talk" and today he made the sentence: "I am happy when I dance!" Love it!

After school I took Theo to PT (Ms. Laura is sick, so no OT today) where Theo worked very hard. We then drove to The Legacy Ranch for his horseback riding lessons with Sherman and Ms. Kaylin. They tried a new Western barrel racing saddle today and it worked really well. Theo was so happy and confident. Every time the ladies would compliment him he would lift his head up and be super strong!

[SOOO STRONG!]

Theo had seven observable seizures today including one that was 70 seconds and one that was 101 seconds. I'm going to reach out to Theo's epilepsy specialist to see what she thinks about these longer seizures.

Wednesday, November 8th:

Theo had a nice long day at school and I was able to get a lot of stuff done around the house. Being Theo's personal assistant is a lot of work! Getting his schedule written out and making sure we have all his appointments made can be a headache, but it has to be done!

After school Theo came home and took a quick nap before Ms. Jen came over for feeding/speech. Theo took a few bites of chocolate pudding with coconut whipped cream. It seems like his allergies and acid reflux are clearing up, so he is more willing to try food again.

Theo had 11 observable seizures today.

Thursday, November 9th:

Theo went to school and Josh and I went to lunch and Menards! We were looking for some cute Christmas decorations, but I kept getting distracted by the giant blowup lawn decorations!

[Can't go wrong with Christmas Vacation!]

After lunch and Menards, Josh headed home to get Theo off the bus while I went and saw The Marvels. It was awesome!

Josh also talked to the contractor and they are going to start on Theo's bathroom in early January. We are very excited!

Theo had nine observable seizures today.

Friday, November 10th:

Theo hasn't needed a nap at school in a while, which leaves plenty of time for standing and walking! Ms. Vicki has been putting these large immobilizers on Theo's legs. They give him extra support so he can stand at his desk or go for walks around the classroom. 

After school I took Theo to PT where he was very sassy with Ms. Cody. He protested quite a bit, but she was able to get him to concentrate. Of course, they ended their session with some time on the swing!

Theo had 13 observable seizures today.

Weekend:

Theo and I hung out at the house on Saturday while Josh was at work. Theo sat in his chair, ate some chocolate pudding without protesting, and went in his stander. 

Saturday was Veterans Day! My Papa (dad's dad) served in the Korean War and my great-grandpa B (dad's mom's dad) served in WWII.

[Papa aka Don Neilson]

[Great-grandpa B aka Don Bourrette]

Thank you all for your service!

There is a town in Iceland that is under a state of emergency due to the high number of earthquakes they are experiencing. They are evacuating some people due to fears of a volcanic eruption. We would love to see an erupting volcano while we are on our trip in April, but we don't want anyone to lose their property or get hurt! 

On Sunday we hung out and watched football! Josh and I will be at Lambeau Field in Green Bay next Sunday for the Packers vs Chargers game! Watch for us on TV!

Theo loves to take his balls, army crawl across his blue pad, lay his head on the hard wood floor, and play with his balls. I don't get it 🤷‍♀️

Theo had five observable seizures today on Saturday and two on Sunday.

Halloween and GI Specialist

I can't believe Halloween week is already upon us! Christmas will be here in no time!

Monday, October 30th:

Theo headed to school, Josh went to work, and I ran some errands. 

Ms. Jess said that Theo had a great day at school. He only had a few seizures and has been working on his communication.

[That's pretty cool!]

Theo had three observable seizures today.

HALLOWEEN!

This makes no sense to me. Come on Utah! Candy corn?! And what's up with the sour patch kids in Illinois?! It seems like all the kids here like Kit Kat bars.

I dressed Theo up as Harry Potter for Halloween. I love his Max Goofy costume, but the jeans are a little tight 🙃 

After school I took Theo to PT/OT and then to The Legacy Ranch for ridding lessons with Sherman. They tried a new saddle and Theo did really well! He was so relaxed that it looked like he was falling asleep.

Our town trick-or-treating times are from 4-7 PM. So, before I left to pick up Theo from school I put our two huge baskets of candy and a sign that said, "Happy Halloween! Please take one!"

Theo and I got home at 5:45 PM and the baskets were almost empty! I put out one more full basket and split my time between watching the door and Theo.

I had to get out my lightsaber a few times when some kids tried to take more than a few pieces 🤣 Even though it had snowed and it was windy, there were just as many kids as last year! These kids are tough and nothing will stop them from getting free candy!

At 7:15 PM I brought in the rest of the candy (there were only a few pieces), took down the Halloween decorations, and put out my Fall/Thanksgiving decorations. The Christmas/winter decorations will come out in a week or so.

"You serious, Clark?"

Theo had one observable seizure today.

Wednesday, November 1st:

The next morning Theo and I drove down to the OSF Children's Hospital to see Theo's GI Specialist, Dr. M. We talked about Theo's most recent acid reflux flare. I told her it seems like his reflux and tummy issues get a lot worse during the fall, during the spring, and anytime he is on antibiotics. I told her that Pulmonology prescribed Theo some new allergy meds in the hopes that they will clear up all the mucus and that will stop the reflux. Dr. M agrees that the post nasal drip and the mucus is probably the biggest culprit right now and we need to wait for the meds to stat working. She felt Theo's stomach and said he feels like he is a little constipated and she wrote a script for an x-ray. At the end of the appointment she said that she was moving to Texas and Theo would be seeing another doctor moving forward. I'm so sad. We've been seeing Dr. M since Theo got his ng-tube and she's one of my favorite doctors. She actually listens and is super smart. We are really going to miss her!  

After we said goodbye to Dr. M we headed downstairs to get an x-ray. The tech asked me if I wanted to take a look at the x-ray. Of course I did! I'm no pro, but I've seen a lot of x-rays of Theo. I could see that there was some gas a poop in his intestines. Dr. M saw the same thing and she told me to have Theo do a cleanse this weekend. Oh poop!

Josh has been working really hard at work and the station is coming together nicely! We are hoping he will be done with this project by the beginning of December and then he can have a nice break for the winter.

[Josh was trying to come home, but his escape was blocked]

Theo had three observable seizures today.

Thursday, November 2nd:

The next morning Theo was in a MOOD! I finally got him to calm down by putting him in his wheelchair and going for a walk around the house while we waited for the bus to arrive.

I was worried that Theo would be super crabby at school, but Ms. Jess said he did a good job. He even ate half of his food pouch!

[Working on his communication pad]

After school Theo went to OT and had a great session with Ms. Laura.

Theo had five observable seizures today.

Friday, November 3rd:

Theo had another good day at school! After school I took him to PT and then Josh and I took him to Walgreens to get his COVID shot. Our goal is to keep Theo out of the hospital and off of steroids and antibiotics this winter

Weekend:

Theo did his cleanse and Josh and I spent the weekend cleaning up his cleanse. It's a huge pain, but hopefully this will help get all that crap out of his stomach, which should help with the acid reflux.

Three observable seizures on Saturday and Sunday.

This is insanely concerning:

Halloween Party and People For Theo

Tuesday, October 24th:

I got home just in time to meet Josh and Theo at PT/OT. We then headed over to The Legacy Ranch for Theo's horseback riding lessons. They added in another cushion and he was able to rest his head comfortably on them. When Sherman first started walking Theo started giggling! It was adorable!

Theo didn't have any observable seizures today.

Wednesday, October 25th:

I always feel like I need a day to recover from my vacations, but alas, I had to get back into our normal routine pretty quickly.

Josh headed off to work, I put Theo on the bus, and I went to the Dermatologist.

There is a freeze coming, so I wanted to document my beautiful flowers before they move on for the winter. I also love our bright red fire bushes and our maple tree that are changing colors.

After school Theo had feeding/speech therapy with Ms. Jen and a Zoom with Ms. Jeannine his dietitian. We are still taking it easy with the feeds until Theo's new allergy medication kicks in. We are hoping that will help with his post nasal drip and acid reflux.

Theo had 13 observable seizures today.

Thursday, October 26th:

After Theo headed off to school I went to Mobility Works to get our van serviced. It's a good idea to keep the auto doors and ramp maintained.

After that I headed to Crumbl to get some cookies for Theo's School Halloween Party tomorrow.

After school Theo went to OT and did really well with reaching and opening his hands.

Theo had 14 observable seizures today.

Friday, October 27th:

Can you guess who Theo is dressed up as for his Halloween Party?!

[He was trying really hard not to smile!]

He's Max from A Goofy Movie! Too cute huh?!

Theo went to school on the bus and then Josh and I met him at the school at 12:45 PM for the hour long party. It was adorable! They had all these stations set up where the kids could do crafts.

After school we took Theo to PT where he worked super hard at standing with Ms. Cody.

I want to say thank you to all the people who participated in our 4th Annual Walk Your Way for VOGM awareness. Ms. Jess was the MVP! She went through the school and got everyone to participate! AND she got her family to participate too! Thank you so much to everyone for your love and support.

Go here if you want to learn more about VOGM and what the non profit is doing to help these warriors get care.

[Tyson, Ty, and Missy]

[Papa, Cole, Brady, Hayden, and Teagan]

[Luke, Porter, Andie, and Kenna]

Andie's family, the Smiths, participated too! We love our bonus family!

[Shawn and Ashlyn]

[Joani and Ty]

[Chasten and Alysse]

Theo had to do two nights with the pulse ox. He wasn't a fan of having the sticker on his toe, but we gotta make sure his oxygen levels are good.

[Kisses from dada makes it all better ❤️]

We lost a talented guy this weekend. FRIENDS is my go-to comfort show and Chandler Bing is a hoot. I know Matthew Perry struggled for a long time with drugs and alcohol. It nearly killed him many times in the past. I appreciate how open he was about his addiction. He wanted to share his story in the hopes that other people would see that they weren't alone in their struggles. He was a good guy and he will be missed ❤️ RIP

Katey, Emily, and I visiting the FRIENDS apartment in 2019.

The tall black building next to the Plaza is the Solow Building. The Solow Building is Chandler Bings office building, so we took pictures in front of it doing the "Chandler smile!"

Thanks for making us laugh ❤️