Willow's Wishes

We are very quietly approaching the four-year shuntiversary for Willow. This is the longest she has ever gone without needing a brain surgery for her shunt; whether that was a revision or a whole new replacement. As parents, we always dreamed of the time when we wouldn't have to worry so much about Willow, her shunt, headaches, symptoms, and so on. But honestly, that was very naive of us. We absolutely do still worry about those things, and in this day of the Covid pandemic, of course, we are a little more on top of research, studies, medical findings, and such. We are finding though that the worry is far less than within her first two years of life, or even the first seven. You see, she is ten years old and has gone through seventeen, yes 17, brain surgeries. So, we will always worry, but now, our worry is less and actually surrounded by more knowledge.  She has learned what her headaches feel like and so while she has them frequently, they are less in pain than she used to descri...

It has been oh, so very, long since I have been here. As Willow is getting older, she still shines a light so very bright to everyone she meets, and we love that about her. She has been doing so very well in her everyday life that we sailed along each day without too much thought. Until recently. Setting aside any thoughts of the current status of the world, I want to take a moment to share how Willow has been.  She celebrated three years of surgery free back in March, and it was truly a happy moment for her and our family. She has never made it this far without going through another brain surgery. So we are very excited to see how her hair is growing, how she is growing, how her personality shines through. But lately, she has once again, experienced headaches, that kind of come and go throughout the day. This has taken place for much of July. She also threw in there a few days of being tired, still mobile, but more tired than usual and no real reason for it. Sometimes she gets emo...

In our house, Superbowl Sunday generally comes and goes without much fanfare. We are not sports fans by any means; but the kids and I will indeed sit down on this day and watch the game. Jonathan and I even pick teams as to who we think will win! This year though, we had another little event happen during our game. Just as the half time show was about to start, I was talking to Willow one minute; go to speak to Jonathan and then a minute later, look back at Willow who was now unresponsive, slumped over, and when her eyes would open - the eyelids would flutter and you could see her eyeballs rolling to the back of her head. What the heck?!   We have NEVER seen this happen to our little girl.  I call the oncall pediatric nurse, by the time they call me back, Willow is now responsive, awake and well. I explain what happened and we had also taken her temp (101); so nothing high at all. The nurse says that since she is awake and alert and responsive now, to just watch he...