What was the longest night you ever had as a parent?

It has been sometime since I did an edit mostly because 2020 was a very tough year. Dominic started to have seizures in late 2019, but it took until May 2020 to be officially diagnosed. He started a medication which made him highly aggressive and ultimately didn’t work. We then tried a second medication which also didn’t work. By November 2020 he was having multiple seizures an hour and constant epileptic output in his right occipital lobe. We were told that long term kids like Dominic tend to get progressively worse unless brain surgery is preformed. The doctors sent his case for a surgical consult and was determined that he was a good candidate for lobectomy. We were told in January that his case would be scheduled for sometime in the spring but with Covid cases rising in our area there was no guarantee for time. Dominic started to have longer seizures and they started to affect his stamina. They pushed him to the front of the list because there was a real worry of him developing ESES. Dominic had major brain surgery on April 20, 2021, which not going to lie was awful and scary. We were released to come home on April 24, 2021 and since then he’s done remarkably well. I haven’t seen any more seizures but it won’t be confirmed for several more months until his brain heals more. He’s really struggling with some behavioural issues, but that’s a combo of medications and surgery recovery still. It’s been a tough year for little man, but he still gives me big hugs and now respond when I say love you by saying back me too.

This is him day 2 after surgery


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