One year ago...

I started to notice Dylan was having short involuntary bursts of movement.

I scoured the Interwebz looking for more information.

I searched, and searched. Children, Seizure, Spasm, Cluster,

... and diagnosed (correctly) that she had Infantile Spasms.

I read how devastating IS could be, SHOULD be,

... and how hard they are to stop.

I was taking videos of her episodes to show her doctor (videos that are still quite painful to watch).

I had yet to learn the term Hypsarrhythmia,

... or what ACTH was (or how much is co$t!).

I did not realize how blessed we would be with the medication coming to us free of charge (even though no dollar amount would have been the limit).

I did not know how many people I would be so grateful to meet directly because of the IS.

But... what I did already know one year ago, is that she is a miracle and that we could do this. (...Or at least that's what I kept telling myself.) We had already done so much.

I still don't know how long it's been since she's been seizure free. I was so afraid to count the days when they stopped because it seemed like we were in the group of lucky few that the medication worked, first round. I didn't want our 'luck' to reverse, for them to not really be gone or to start again, which is too common. I felt like the moment I said out loud that they had stopped, they would resume.

Sweet sweet girl, ACTH was miserable... miserable... but oh, so worth it. Which is exactly what I had read about it. Hallelujah.

How blessed we are.