Monday, September 11th:
Josh's job in Elmhurst is wrapping up, so they moved him to a job in Matteson. NICOR is building a new station out there and he is the Chief Inspector on that job.
Theo had a great day at school and since he doesn't have therapy anymore on Mondays, he rode the bus home.
Theo had four observable seizures today.
Tuesday, September 12th:
I put Theo on the bus, Josh headed off to work, and then I went and got my allergy shots.
Theo had another great day at school. He is more awake and is participating in all the activities, BUT he is still struggling with eating.
After school I took him to PT at High Hopes. It was supposed to be a co-treat with Ms Laura (OT), but she had to cancel. Theo was sad during the whole session. I think he was really bummed out Ms. Laura wasn't there!
Theo had four observable seizures today.
Wednesday, September 13th:
The next morning we got ready extra early and left at 6:45 AM, so we wouldn't be late for Theo's Neuromodulation appointment at Lurie's which started at 9:00 AM.
[Traffic was SOOO bad]
It was a huge mess getting into Chicago. Theo's doesn't like it when the van stops, so he was pretty upset for the last hour.
We got to the hospital at 8:45 AM and made it to our appointment on time. We saw the Neuromodulation nurse, Amy Tenet, and another nurse from Epilepsy. They scanned Theo's VNS and pulled up all the information on their iPad. We compared notes and were pleased to learn that when we swipe the magnet it does register. So, that's good news! Those swipes send up therapy for 1 minute at a higher intensity than his regular 3 minute therapy intervals. So the swipe will definitely help with those clusters. They increased the frequency of Theo's VNS. It will now go off automatically at 2 minute intervals (down from 3 minutes) for 30 seconds. They are not going to increase the intensity at this time, just the frequency.
They prescribed nasal spray (Valtoco) as an emergency med to replace the rectal gel medication (diazepam). Luckily, we've never had to use the emergency rectal gel, but the nasal spray will be very convenient if we ever need to use it.
We are going to hold off on adding or weaning him off of any more medications right now. We will revisit that when we go back to see them in 3-4 months. They were really happy with his VNS stats and are so glad that he is more awake at school!
Theo had no observable seizures today
Thursday, September 14th:
Theo went back to school today and he was very excited when the bus pulled up!
He had a pretty good day, but his stomach was upset, so he was a little crabby.
I picked him up early from school so we could go get his new AFOs and SMOs. They fit great and the tech even make sure they fit in Theo's current shoes.
[Look how much he's grown!]
Later that night I got a call from my ex-SIL, Ally. She said she was supposed to be going on a trip to Boston with a friend, but her friend canceled on her at the last minute. She asked me if I wanted to go and I said "YES!" Of course! My parents were already planning on coming up that week to visit, so I called them and asked them to come up a few days earlier. They said that works! YAY! I bought my tickets and I'll meet Ally in Boston on September 29th! I can't wait!
Theo had six observable seizures today.
Friday, September 15th:
Josh headed off to work, I put Theo on the bus, and then I headed to the Red Cross to donate blood. I signed up for a regular donation, but they asked me if I would be okay doing a "Power Red Donation." I said that was fine! I have O Positive blood which is the most common blood type and over 80% of the population has a positive blood type so they can receive O Positive blood.
The process only takes about 20 minutes longer than a regular donation and I am able to donate twice the amount. They take 1 pint of my blood and a machine separates out the platelets and plasma. The machine then returns the platelets, plasma, and some saline to me. Once that is completed they take another pint and repeat the process. I felt fine while I was donating, but I got cold when the platelets, plasma, and saline were going into my arm. The nurse said that was common. After I was done I had a few Oreos and drank some water.
Since I did a double donation I can't donate again for 112 days.
I made a quick trip to Costco and then went home to work on an itinerary for our New England trip. Ally has never been to New England, so I told her I would write out an itinerary based on the road trip that Josh and I did back in 2016. I got super distracted and didn't drink enough water or eat lunch. When it was time to go get Theo I grabbed a protein shake and ran out the door.
Theo had another good, but crabby day at school. Ms Jess thought it could be from his AFO's being too tight, so she took them off for a little bit. She said he didn't cheer up right away, but he finally felt better after sitting in his rocking chair and going poop! Constipation is awful!
Theo had six observable seizures today.
I started to get a headache around dinner time and it got worse over the next hour. It felt like a migraine was coming (I get them once or twice a year), but I couldn't take any Excedrin since I had donated blood that morning. Ugh! I took Tylenol instead and that didn't help. It ended up being a super bad migraine and I felt awful. Luckily, I was able to fall asleep and it was mostly gone when I woke up the next morning. I don't know if it was triggered by the blood donation or if it was just a coincidence, but either way I need to remember to eat more, drink more water, and take an iron supplement the next time I donate.
The Weekend:
Josh had to work in the morning on Saturday, but he was able to be home in the early afternoon to help me with Theo. I was still feeling tired from my blood donation and I wasn't supposed to do any heavy lifting (Theo is 60 lbs) for 48 hours.
We had a rainy day on Sunday which was fine since we had football to watch! It was nice to be able to watch the Packers and Chargers games at the same time!
Unfortunately the Chargers lost in OT and we are now 0-2. The Packers had a chance to win their game at the end during a final charge but, they couldn't pull it off. They are now 1-1. Bummer!
Theo had three observable seizures on Saturday and three on Sunday.
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