Wednesday, July 8, 2009

fear and trepidation

Yesterday was one of the best of all bestest days. A day that I DREAMED of. A day I feared would never come. A day that still doesn't feel real to me. Yesterday...7-7-09 was the day that the monkey was declared "hypsarrhythmia" free.

I saw it before he said. I watched the EEG on the monitor. I shook my head out of confusion, the words "no, it can't be possible" coming out every few minutes as I looked confusingly at my mom, the monitor, the tech, and my spasming monkey lying next to me. I couldn't be seeing what was on the screen. It isn't possible, right? She is having spasms. Six of them just during the EEG. So how is it possible?? When?? Was it the last bump in Vigab to 2000k..was it the ACTH increased dose? I don't know how, why, when ..all I know is Hyps has left the building. what? I was SO incredibly happy yesterday. But now I have this latent sense of fear and the unknown scares me. Scares the crap out of me, actually. The loathing is for seizures in general. I hate that my happiness is riddled with little bullet holes of epilepsy/IS facts. That we don't even KNOW what kind of seizure type she is having... nor do we know why she is still having SPASMS. I read today that the hyps and spasms don't have to leave at the same time, spasms can follow a "non-hyps" EEG for several days after. I also read that sometimes "clean" EEG's can show hyps in now I am wondering if we are truly free of it. (see how my realist/pessimist scared self is taking over my less than 24 hour ago happy self) When do I start asking them to put us back in for VEEG. When do I find out what seizures we are dealing with? Should we really start a new med (or kind of old one..Zonegran) if we don't know what we are dealing with??

Plus the general ACTH wean has me a bit nervy. I heard what I longed to hear yesterday, a mohters greatest day, and here I sit, confused, scared, in unknown territory...almost where I was when we first got this damn diagnosis. I have lived my life around IS and hyps the last 7 months. Now it's gone (sort of) and I don't know what to do. I don't know how to feel. I was happy...I want to be happy, be positive..but so much doubt, and info, and anxiety is lurking in the back of my head. I'm trying to push it down and enjoy yesterday still...but I've been an emotional mess all day today.

I guess one day at a time is all I can do right now. And love that little girl like no one has loved before. She is my life, my soul, my heart. My world. My everything. So I will go back to positive mode (or try to as best I can for her sake) because she needs me to do that.

I HATE hyps. I HATE seizures. Hate is a strong word, but not strong enough I think for IS.

My daughter is strong. Strong enough for IS. She kicked Hyps ass. Hopefully we'll get a VEEG set up soon and calm mommys nerves a bit ...but for now, Monkey TKO'd Hyps. She has the scars to prove it unfortuately (in her legs, from the last 2 weeks of injections...the IV they put in when we were in the hospital over the weekend, the blood work she had this week..etc.) She will never falter. She is strong. And I will NEVER give up hope, belief, fighting. I won't stop. Ever. For her, for all IS children. For all those affected by seizures. I'll never stop.

Sometimes ...lately...I feel like all I can do is fight, because there is very little else I can do. So that's what I do. And I fight well, let me tell you! Don't give up out there. Fight. Believe. Pray. Good things do happen. It make take time, but it will happen. We are proof!

Love and hugs to you all. My mind is tired now, and I think I should stop before I start crying! Good night friends. Much love and SF'dom.