Epilepsy Update

Monday, July 29th:

Josh made the long drive home today from Wisconsin. We missed him, but I'm glad he was able to spend time with his family! 

[Josh brought me some cheese curds 😋]

Ms. Jess came over to watch Theo while I was working. They always have a fun time!

Theo had 16 observable seizures today.

Tuesday, July 30th:

Ms. Jess came over again today while I went to work and watched the Olympics in the basement 😁

[Women's gymnastics is a big deal!]

That afternoon I took Theo to PT and then to see Sherman at The Legacy Ranch. It was a VERY hot and humid day (over 100 heat index) so they had to cut Theo's lesson a little short. Sherman, Theo, and everyone else got a little overheated.

Theo had 13 observable seizures today.

Wednesday, July 31st:

Josh headed off to work while Theo and I had a nice day at home.

I saved up all my filing work for today, so I could be upstairs with Theo. 

Good thing I have this fancy electronic hole puncher or else this would have been painful!

That afternoon we went to see Ms. Laura at Thrive and then we had a video call with Theo's Epilepsy Specialist, Dr. Garcia Pierce. 

We went over Theo’s meds and how he is doing with the VNS increase from earlier in the month. Theo is not having as many of those longer (30-60 second) seizures, but he is still having a lot of the shorter ones. Hopefully the VNS increase is helping to break up the long seizures and the clusters too. We talked about other meds we can try (cannabidiol, rufinamide, topiramate, and zonisamide) and all the benefits and side effects they can have. We decided to let the VNS do it's job for now and if Theo is still having a lot of seizures in November then we will talk about adding in another medication. If we do add in another one we can hopefully wean him off of the Valporic Acid. Dr. Garcia Pierce also talked about the benefits of a Keto diet, but we will talk about that again in November after I talk to Theo's dietitian. The last thing Dr. Garcia Pierce brought up was the Danny Did Foundation. Due to Theo's complex epilepsy he is at higher risk of SUDEP. The concern is that these small tonic seizures will cause a larger and violent TC one day. If this happens and Theo is sleeping, it can be fatal. There are a lot of devices out there that will alert parents if their kids have seizures during the night. We went through all the devices that are recommended by the Danny Did Foundation and decided that Theo would benefit from having a SAMi device.

Dr. Garcia Pierce wants us to do bloodwork again in October (gotta keep an eye on those liver enzymes) and we will see her again in November.

Theo was showing off to Dr. Garcia Pierce during our video call. He was showing her how he can reach his toes with TWO hands!

And he can hold out his foot!

Nice job Theo!

Theo had eight observable seizures today.

Thursday, August 1st:

Theo has been getting up around 5:00 AM for the last few weeks. It doesn't matter what time he goes to bed or how many naps he has. Today he was up even earlier. But then right before Ms. Jess came over at 9:00 AM, Theo wanted to take a nap.

After working in the basement for a few hours I went to Costco and Walmart to get Theo's back to school items. He is all ready for second grade!

That afternoon I took Theo to OT. Theo was a little stubborn, but he did a good job sharing his swing with one of the other kids.

Theo had 10 observable seizures today.

Friday, August 2nd:

Ms. Jess came over again to watch Theo (yes, that's four times this week), so I could work. I also had a call with a nice lady that reached out to me because I am the chapter lead for the Illinois Changing Spaces Campaign. She is a medical student in Chicago and she wanted to run some ideas by me. It was a great conversation!

That afternoon I took Theo to PT with Ms. Cody. We were hoping for another swimming session, but we didn't want to risk getting caught in a thunderstorm, so we went to the clinic.

Weekend:

We watched a lot of the Olympics this week! I love supporting my country and cheering on these athletes! 

[Theo fell asleep while stretching in his bed]

They put gas on the line at Josh's job, so now they are digging up and removing the old line.

The valve station also has gas and passed all the tests, so they will be able to bury it soon.

Theo got his eye gaze! YAY! I'm so excited that we will be able to use it at home and at school!