Happy Halloween!

Monday, October 26th:

Happy Sports Equinox Day!

Theo and I had a very busy day in Peoria. First we met with Theo's Developmental Specialist, Jennifer Cunningham (APRN, CNP). We had A LOT to talk about.

Endocrinology - It seems like Theo is going through early puberty. This caught me off guard because he is physically and developmentally delayed. I also feel like Theo is being physically stunted because his GI wants to keep him small. So, this is another reason why puberty would be delayed. Maybe it's connected to medication or the damage in Theo's brain. Either way, Jennifer is going to send over a referral and hopefully Endo will have some answers for us.

OSF Dental Group - Jennifer sent over a referral to the OSF Dental Group and we will be seeing them on Wednesday.

GI & Diet - Before I could even bring it up, Jennifer told me that she was concerned with Theo's weight. He's lost almost 8 lbs in the last year. That's a lot for a kid. I told her that Dr. Ullah does not want Theo to gain any weight, so he won’t let us give him more food. I told her that Theo’s Dietitian (Jeannine) and I are concerned that he is not getting enough calories. Jennifer said she is going to reach out to Jeannine and Dr. Ullah. She said that she can take over his RX for his food if Dr. Ullah doesn’t want to give him more food. I understand the GI Specialist wanting to keep Theo small, BUT I don't want him to be stunted and not have enough calories. He needs calories for his brain to develop and he needs calories for his bones and muscles to grow.

Genetics - Jennifer will send over a referral to the OSF Genetics group (we haven't seen them in person since 2021). That way they can get a sample of his PWS when he is under anesthesia in January. They want to test Theo for M-CM and a few other mosaic abnormalities.

We also discussed our success with passing Sami's Law (she is a HUGE fan!) and the new movie Being Heumann that is coming out soon. 

After our chat with Nurse Jennifer we headed over to NuMotion. Eric met us there and he replaced Theo's old molded seat cushions with the new ones. He also did a few minor adjustments to the Zippie.

It was a very productive day!

Tuesday, October 27th:

Theo went to school, Josh headed north for work, and I went to Red Thread's and Safety to pick up some SWAG that we had embroidered. We bought each of our employees a jacket of their choice and then I took them to a nice local lady who embroidered them. I think everything turned out great!

I went to the post office and sent off the boxes to our non local employees and then I got boxes ready to be delivered to our IL guys and gals.

I love our current SWAG collection!

That afternoon we took Theo to The Legacy Ranch for his lesson with Sherman.

Wednesday, October 28th:

Josh, Theo, and I made the long trek back to Peoria so we could meet with the OSF Dental Group. We went over Theo's dental history and they tried to look in his mouth, but he wasn't having it. They said that they would be happy to take on Theo as a patient. They are going to try to coordinate with the Orthopedic Surgeon team so that they can do everything while Theo is under anesthesia on January 5th. Fingers crossed!

That afternoon, Ms. Jen came over for feeding/speech therapy. Theo did some food play and played peek-a-boo barn. He was very chatty!

Thursday, October 29th:

Theo went to school and had a great day! We were supposed to interview a nurse today, but she fell through.

I worked on getting Theo's Halloween costume ready, so he could participate in festivities at school tomorrow!

Friday, October 30th:

HAPPY SCHOOL DAY HALLOWEEN!!

Theo went as the President of the Rollin' Rovee Fan Club! Join today!

While Theo was at school celebrating Halloween, I went to donate blood. Luckily, my hemoglobin numbers were good and I was able to do a power red donation.

Unfortunately, I got a migraine later that afternoon. Ugh. We were supposed to meet with another nurse, but I had to cancel. We will reschedule for next week.

Saturday, October 31st:

HAPPY REAL HALLOWEEN!

We stayed at home and passed out candy to the local kids. We had so many trick-or-treaters this year! It was great!

My little brother, Luke, ran a 1/2 Marathon today! He finished in under 2 hours! 👏🏻👏🏻 So proud of him!

Sunday, November 1st:

Ms. Jess came over to watch Theo, so Josh and I could go into Chicago to see The Book of Mormon at the Cadillac Palace Theatre! We got "Suite Service" so before the show started we went to the VIP suite and got some light snacks and drinks. During intermission we went back to the suite were we got some desserts and drinks. Having our own bathroom made it all worth it!

The Book of Mormon was amazing! I laughed so hard that I cried! The music is great and all of the performers were top notch. It is not for the faint of heart though. The musical was written by the creators of South Park, Trey Parker and Matt Stone. It is crude, offensive, vulgar, shocking, full of sexual innuendos, and so hilarious! I'd see it again in a heartbeat! Josh loved it too!

After the musical we went to dinner at Gibsons Italia. We got steak, buttery potatoes, crab, and tiramisu. Everything was delicious!

VOTE and Neuromodulation

We got some updated pictures of Brodee! He has taken up golfing! Looks like he is having a great time!

Monday, October 19th:

I send Theo off to school and Josh went to work. While Theo was at school I got caught up on some emails and work stuff. On my way to pick up Theo I stopped by the Grundy County Court House to drop off my mail in ballot. Please make sure you vote!

Theo had a great day at school. He worse his glasses, went in his stander twice, and played with a sensory bin. 

After school Theo had PT and OT and he did great!

Tuesday, October 20th:

Theo headed off to school on the bus and I jumped on a Zoom for the Windsor Hills HOA. They were having the yearly budget meeting and we were electing a new HOA Master Board. Luckily, the election went great and our board is staying the same! 

After listening to the Zooms I went to get my allergy shots and then I went to Costco to get a bunch of winter stuff for a charity drive. 

After school I took Theo to see Sherman at The Legacy Ranch. He did great!

That evening I had book club and we got to Zoom with Kai Bird who is the author of American Scoundrel. It was such a great meet up!

Josh has been working really late in order to get a few things done before the deadline. I know it's not easy. We appreciate him so much!

Wednesday, October 21st:

The Lakers will start their season tonight. I REALLY hope they have a great season since my Angels finished with the second worse record in the league and my Chargers are off to a 0-6 start. But hey BYU is doing great! I guess you can't win them all!

Theo and I made the long drive to Lurie Children's Hospital in Chicago. I left 2.5 hours before Theo's appointment. Luckily, we made it to the parking garage in just 90 minutes! 

[Hi Chicago!]

I love it when he wants to hold my hand. It's usually just for a few seconds, but I'll take it!

We met with Amy Tennant with Neuromodulation. She scanned Theo’s VNS and it shows that there is a 25-50% battery life left. She is going to send the results for further analysis, so they may be able to tell EXACTLY how much batter life is left. She said replacing the battery is a very easy procedure. She is not going to make any changes for now and we will see her again in six months.

On our way out we stopped by the only bathroom in the entire hospital (all 23 stories) that Theo can use. It's a family/accessible bathroom with a powered, height adjustable, adult sized changing table. When we got there it was being used, so we patiently waited. Not surprisingly, we waited for a long time and finally someone strolled out. He looked very embarrassed as he gave us a little wave and walked away. I know having a private bathroom is nice when you need to do your business, but this is literally the ONLY bathroom that we can use in the entire hospital. And there are literally only five of these family bathrooms with a powered, height adjustable, adult sized changing table in the entire city of Chicago. So, please just be aware of that.

We were lucky again as we drove home and we made it to our house in just an hour!

That night the Lakers won their season opener against the Warriors!

Thursday, October 22nd:

Fall is finally here! Look at my beautiful tree as the sun was coming up! Time to get some mums! 

While Theo was at school I attended a Zoom meeting with my friend Deepa and some of our new friends from the ICDD. We had a great discussion and they invited us to join them on November 17th in Springfield for "Advocacy Day!" I am going to try to go! You should come with me! Scan the QR code to register!

That afternoon I joined a webinar that was all about the upcoming changes to Medicaid and the Supplemental Nutrition Assistance Program (SNAP). 

Friday, October 23rd:

Theo headed off to school while I attended a few more webinars and I worked on the webinar that I am going to be giving in February.

I was supposed to get my last two travel vaccines today, but I got a migraine instead 🤦‍♀️

On my way to pick up Theo from school I swung by Walmart to get some Halloween candy and then I stopped by Senator Rezin's office to drop off my donation of winter clothes.

Right when I was talking to Theo's teacher and his aid about his day, Theo had a big seizure. It started hard to the left, then went center and pushed his head straight down, and then went to the right. Ms. Kate and Ms. Jamie jumped into action quickly and swiped him and documented the seizure in his notebook. While Theo was having the seizure the other class aids kept telling him that he was okay and that they were there. It was so sweet to see them all supporting him. The seizure was about two minutes long and Theo's lips were turning blue. He finally came out of it and I asked him if he was okay. He knocked "yes," but he looked tired.

When we got home I put Theo down for a little rest/quiet time. Ms. Becca came over, but she decided that it would be best for her to come back tomorrow morning when Theo is well rested. 

Theo took a good nap!

Weekend:

Ms. Becca came back Saturday morning and they had a great session until Theo got tired. 

Josh went to a few pumpkin farms and found us some beautiful mums! 

[Before]

[After]

[Before]

[Giant mums in the van]

[Hi friend! Sorry I sprayed you with the hose!]

[After]

I love these giant triple mums SOOOO much! They just look so fluffy and happy!

Unfortunately, BYU lost to an unranked team and we dropped from #2 to #8, which is not too bad. And the Chargers didn't lose because they had a Bye Week, but that didn't stop the memes 😁