So far October sucks. It really sucks. It's only day 6. We are having drama with our new insurance company, my credit card info got stolen, we had to drop $1000 to fix the door on the van, Josh's job is stressfully unpredictable, AND Theo ended up in the ER.
After being with BCBS since before Theo was born, Josh's company decided that they were going to switch to Cigna on October 1st. It's been a nightmare. It looks like Theo is going to lose all of his private therapists unless we pay out of pocket. Can you afford $1600 a week for therapy? If you can, you are very lucky. I know I complained about BCBS never covering Theo's equipment, but they never fought us on his private therapies, doctors visits, or hospital stays. I'll gladly take them back after the crap we are going through with Cigna. We've also been trying to get them to approve a new seizure med for Theo, but they denied that also. AND NuMotion had to resubmit Theo's wheelchair to Cigna and I haven't seen any movement on that. Theo's well being shouldn't depend on Josh's employer and their choice of an insurance company. It's nuts!
*Deep breaths*
Monday, September 30th:
Josh told me that one of his guys was going to be coming by to pick up this part. I don't know what it is or what it's for, but I knew it was expensive. I didn't want to run up from the basement when he showed up, so I put it outside on the front porch.
Since it's expensive I hid it with my fall decorations! No porch pirates are gonna find it! I thought it was pretty funny how well it blended in 😁
Was anyone else's Verizon down all day?!
After school I took Theo to OT where he worked very hard for Ms. Laura.
Theo had eight observable seizures today.
Tuesday, October 1st:
After I got Theo on the bus I headed to Mobility Works to get my oil changed and the van serviced. The automatic doors have been getting stuck, but that tends to happed every six months. Once they get adjusted then they are fine for another six months. But this time the mechanic said there was a part that needed to be replaced and it would cost 1K. Of course.
I then went and got my allergy shots before headed home to work for a bit before Theo got home.
Theo and I went to PT and then to see Sherman at the Legacy Ranch. But Sherman was resting after a busy Sunday, so Theo got to ride Zeus! We also brought "Flat Cole" so that we could get some fun pictures for my nephew!
Theo has been saying that he is bored at school. It's pretty funny!
Theo had 12 observable seizures today including one that was 79 seconds and one that was 89 seconds.
Wednesday, October 2nd:
Ms. Jess said that Theo had a great day, but he did have a few long seizures. The Epilepsy Specialist is really pushing for a new medication, but Cigna is dragging their feet.
Back in March Josh bought this cute indoor Golden Gate Ficus Bonsai tree. It was doing well for a while, but then he started to struggle.
I tried to put him in the sun by the front window and a few times I took him outside for some direct sunlight. BUT he got a little overwhelmed and dropped all of his leaves. I brought him back inside and bought him a light.
I bought him some food and tried my best to bring him back to life. After two months of nothing, some leaves started to come in!
I watched a few videos and figured that now would be a good time to trim the dead branches. Let's hope he continues to flourish!
Usually on Wednesdays we see Ms. Jen and Ms. Jeannine, but we can't see Ms. Jen until insurance figures out what they want to cover. It's such a pain.
Theo had 17 observable seizures today including ones that were 155, 60, and 70 seconds long.
Thursday, October 3rd:
After I put Theo on the bus I headed back to Mobility Works to get the van worked on again. They installed the new part and I paid my bill. As I was driving to the grocery store I received a text from my credit card asking me if I tried to purchase something on Tik Tok for $45? Nope. I don't even have Tik Tok. A few minutes later I received another text asking me if I tried to purchase something on Tik Tok for $41. Ugh. Looks like my credit card number was stolen. Luckily, my credit card company caught the fraud quickly and shut down my card. They are sending me a new one. I hope I get it before I leave on Friday for my trip to Utah 🤦♀️
Theo's class went on a field trip to the Kane Family Farm. They went on a hay ride, saw some animals, and painted pumpkins.
[Ms. Jess and Theo]
I think they had a great time visiting the farm! After school I took Theo to OT. He knows Ms. Laura is going to work him hard, but he still gets the biggest smile on his face when we pull into the parking lot!
Theo had 10 observable seizures today.
Friday, October 4th:
Josh went to work up by the airport, Theo headed off to school on the bus, and I went for a jog. After I was done I got ready and waited for a representative from an accessibility company to come by and give us another quote for the garage lift.
At 11:46 AM I got a call from Theo's school. It was the Executive Director, Mr. Neil. He told me that Theo had a seizure that lasted more than three minutes, so they administered his emergency nasal spray and called 911. I told him I was on my way to the school, but to let me know if the paramedics take Theo and I'll head to the hospital instead. I called Josh and then headed out to the garage. Right then the representative from the accessibility company showed up. I told him I was sorry, but I had to leave. He completely understood.
As I was heading to the school I got a call from Mr. Neil again. He said Theo was still seizing when the paramedics came, so they took him and Ms. Jess to the hospital. Good thing the hospital is literally a mile from the school. I headed to the hospital and when I got there Mr. Neil was waiting for me with Theo's wheelchair in the lobby. One of the nurses took us back to Theo's room. Ms. Jess was there and she told me what happened at the school.
Theo had a 90 second tonic seizure, came out of it, and then went right into another one. She restarted her timer and when it hit 3 minutes they gave him the nasal spray and called 911. The paramedics came to the school, evaluated Theo, and decided to take him to the hospital. Ms. Jess said that even after they arrived Theo was still having the tonic seizure.
After I got to Theo's room he was alert, but super tired. It looked like the nasal spray was finally kicking in. I thanked Ms. Jess and Mr. Neil for all of their help and they headed back to the school. I talked to a few nurses and the ER doctor and tried to explain Theo and his complex situation. We have been in this ER before. Back in March 2022 Theo fainted at school and he was brought here. But a lot has happened since then, like Theo getting a VNS and being diagnosed with Lennox-Gastaut Syndrome (LGS). He said they were going to put in an IV and load Theo with Keppra. He was also going to call Theo's Epilepsy Specialists (Dr. Garcia Pierce) and Neurosurgeon (Dr. Lin) to see if they needed anything or if they wanted him transferred.
[Ms. Jess made sure Theo had his emotional support ball]
Josh showed up (he has a long drive) and then they took Theo for a CT of his head and a few x-rays. After Theo got back to the room he took a nice long nap. Ms. Jess came by after work to visit which was very nice. Theo was very happy to see her too!
[Theo was very tired, but very happy when his dada showed up]
[It was a long wait to get released - good thing we have the iPad]
It took about five hours, but Theo was cleared by Epilepsy, Neurosurgery, and the ER doctor to go home. Dr. Garcia Pierce increased Theo's Keppra dose and prescribed him a bridge of Clonazepam for him to take for the next three days. As of Friday afternoon we are still waiting for Cigna to approve Theo's new medication. Maybe this ER bill will nudge them in the right direction.
Weekend:
On Saturday Josh went to work while Theo and I had a chill day at home. I gave Theo his bridge medication and it made him very sleepy. He took a few naps and didn't want to do much.
I had a Zoom meeting with my fellow Changing Spaces chapter leads. It was great and it seems like there is some progress being made!
Did you know that this month is AVM Awareness Month? Of course it is!
We have two fundraiser going on this month:
Come join us and show your support if you can!