This blog is so hard to keep current when things are going well with Willow. She has exceeded expectations that were either set for her or implied. She is surgery free now since April 2012, and while we still have some days that leave her dad and I wondering - she is actually thriving! So, what do you share about a child that is considered Special Needs, or Medically Fragile, or just one who has a story to share but life seems 'normal', 'quiet', dare one say - 'ordinary'?
Well, Willow is a star. Her personality lights up a room, her smile and her eyes just light up when she is happy, or has an idea, or wants to share something with you. She is just a bubble of spunk, and she is doing GREAT! As I said, surgery free now 3 years and 7 months, walking, running, jumping, flipping off our furniture (against my wishes), swimming, sliding, hop scotching her way through life. She has great fine motor and gross motor skills, she is speech delayed (and if you ask her she actually speaks Willoweese). That is the only thing that is slowing down our sweet Willow, and honestly it doesn't slow her down much these days!
She is in preschool at a full day, 4 day a week program. She loves it! She tells me about her friends, invites me in, asks me to write her mail (they love to get classroom mail), she always has a story to tell, or something new to show us. So as I said she is doing GREAT!
So, why is it that when it comes time for her yearly neurosurgical visit I get this lump in my stomach? I mean, it is silly really; I just shared all the great things she is doing and can do. You wouldn't think there is anything wrong with her at all.... but hiding behind that beautiful smile lurks hydrocephalus. She has slit ventricle syndrome. For her that means her ventricles have collapsed during an over drainage episode and they have closed up completely due to scar tissue. Currently, we know and have known for the last year that her shunt is only partially working, so some days we wonder will this bring us to that next surgery? It is a bummer (that isn't even a great word to describe it), it sucks that this looming feeling comes when the doctor calls to schedule a routine visit. Who wants a routine visit with a neurosurgeon?! Well, while I am a bit worrisome about the visit, I am choosing instead to look at what Willow is doing on a daily basis - amazing everyone whom she meets.
Today, she worked in our car hard at learning to spell new words, and she wrote them herself as her siblings spelled them out for her! I LOVE that she is learning to spell, write, and that she knows her letters!! Here are a few pics from Halloween, random shots (she loves the camera - there is no doubt about that), and her writing. I hope you enjoy :)