It’s been a little while since I last updated about Maddox. Part of that was because his most recent EEG results took longer than usual to come back, and part of it was just us trying to process everything.

Maddox had another overnight EEG last Wednesday into Thursday. It actually took the hospital longer than usual to get him hooked up, so by the time everything was set up, the doctor came by shortly after to do rounds and there wasn’t much to review yet.

This EEG was done because we have officially weaned him off ACTH. His neurologist wanted to check how things were looking regarding the infantile spasms and the hypsarrhythmia.

The neurologist covering his EEG wasn’t Maddox’s regular doctor, so he didn’t have Maddox’s full background. From what he initially saw at the time, it looked similar to the EEG he had about two weeks into treatment. Of course, he said he still needed to review the full reading across all of Maddox’s different sleep and awake states.

I was expecting the results to be fairly comparable and honestly wasn’t expecting anything new to come up. Unfortunately, it feels like with these experiences we can’t seem to get two pieces of positive news in a row.

Maddox’s vEEG ended up capturing 10 myoclonic seizures during the 20-hour scan. I had no idea they were happening, so it was a complete shock when I opened the report on MyChart. They were listed as being less than two seconds long. From what I understand, these seizures are usually very brief and people often recover from them quickly.

Of course, I immediately messaged Maddox’s neurologist to try to get more answers. After reviewing the scan himself, he actually felt like they were closer to one second long rather than two. We’ll be talking much more about this in April when we go back to discuss starting Maddox on the keto diet. In the meantime, we are increasing one of the medications he’s already on that can help control myoclonic seizures.

I’m still feeling confused and honestly don’t even know exactly what to look for, because the description in the report simply said “jerked head left.”

Please just keep praying for our baby boy. To most people looking at Maddox, he looks like a totally normal baby. But he’s going through so much every single day that even we, as his parents, don’t always see or fully understand. And that part is really hard.

To share a little bit of fun in the middle of everything, we’ve tried to make time for some special moments with the kids too. We all went to Disney on Ice recently, and the other night the kids got to go to their first hockey game!

Maddox slept through most of the hockey game, and the girls weren’t quite sure what to think at first… but it definitely made for some fun moments.