Guess Who’s back? Back again?

If you said seizures, you would be correct.  This is how things are supposed to go  post surgery. The RNS is strictly monitoring right now.  Despite the fact that we  knew that they would return,  this is harder somehow.  We had a nice reprieve and I think it might be the first time we’ve let our guard down or taken a breath and now this feels like a punch right in the gut. It’s hard, even though we knew, it’s hard. Really, all of this is hard. Knowing we’re playing the long game and will hopefully have some seizure relief helps but it’s still heartbreaking and exhausting.

 When you have a child you celebrate so many milestones and those amazing firsts. When you have a kiddo who has Epilepsy (or any kind of chronic condition, I imagine) you  encounter some other firsts. Some are amazing and some are heartbreaking. 

This week we had : the first big seizures since before surgery,  first time we’ve had to go get Max from school for a big seizure since before surgery, the first time we’ve had to use rescue meds in a few months, the first time I’ve been at a loss of what to do and considered driving us to Lurie’s to get admitted to the ER.  

I can count on one hand the times that Max has complained or been sad about having Epilepsy. This is taking its toll on us all right now. He is Max and amazing so he doesn’t stay down for long. He’s ready for a break though and so are we. It does help him (and us) to remember that he is helping others with all the data they are gathering from his RNS.  We have an in person appointment this week to talk data and we’re hopeful they have enough data to make some adjustments to his RNS.  

 In the meantime, we will keep on looking for the bright spots.