Ian Update 1/24/24

It’s been almost a month since we first started this recent round of seizure medication adjustments for Ian. And we still haven’t quite got it right yet.

Last week, we talked with neurology and told them we have still been noticing Ian having starring spell seizures 1-2 times a day. So, we are now on our third adjustment to get his seizures under control.

Ian is maxed out on the dosage of his other two seizure meds for his age and weight, so a third one had to be added. We started it a couple nights ago, and we are to let neurology know after a week of starting it how it’s holding up. So far, I’m still noticing some seizure activity, but it does seem like the episodes are becoming shorter, so I’m hoping as his body gets adjusted to it, we’ll begin to see none.

Next up, we have Ian’s routine MRI next week, an oncology visit, a neurosurgery follow up, and we have to take him to get fitted for a new leg b

We’ve also been seeing an increase in Ian being defiant. Not really a preferred behavior, but that is much more who Ian was before his brain injury. Kind of a bittersweet moment for us as Ian continues his healing process.

There’s been so many different issues, so many struggles. I don’t know that it will ever fully end. That’s the life you live when you are a parent of a child with chronic conditions. But somehow, we have to keep pushing forward. Even our best doesn’t feel good enough. Even when the best we can give is 25%- it’s still my full 25% that I can give. And sometimes, that’s enough. it has to be enough. I have had to learn how to be more gentle with myself. I’ve had to learn and accept I cannot do it all, and more importantly, that it’s okay that I can’t. I am not worth less because of it. I’m doing my best. And that’s enough for me.