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!
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.
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