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...

 Okay, so we will just go through our day with some random pictures. :) We celebrated Willow's birthday today, as celebrating on the 24th can be quite difficult when you would like friends to come over as well. She is learning to blow out the candles after making a wish, but she used to tell the wish aloud. So in the second picture where she is looking off to the side, she is whispering her secret wish :)  She loved all of her gifts, and spent the afternoon playing with each one of them. We painted the apron and hat, built puzzles, played with Shopkins, PonyPop toys, and combed Princess Celestia's hair/mane. At bedtime we read the new Pete the Cat book and colored in the new Inside Out coloring book. I don't believe there was a gift untouched today. Thank you for helping us celebrate our little Willow turning 5. Though if you ask her, she will tell you she is still 4 because her birthday isn't until the 24th, so she isn't 5 y...

So this last Tuesday evening Jon and I were invited to attend a lecture in Detroit about the Hydrocephalus Clinical Research Network, and current research being done. Long story short, it was a GREAT event that I feel truly blessed to have been able to attend. But what was funny about all of this, is that I was explaining the event to my brother, and told him that while speaking to a neurosurgeon there, he seemed to recognize Willow's name.  So, I mentioned her blog, the PHF, and he says that he thinks that must be it. Yet Willow then perks up in the back seat and says, 'Wait! Mom, you have a blog on me?' Then she goes on to ask what is a blog, is it like the tv show Dog with a blog? And what is it all about? I laughed a bit, and explained that her blog a story of her life. Her journey with hydrocephalus, which means I will talk about her surgeries, I tell people about all the good things she can do. How even though she has a shunt, she can do all kinds of amazing things ...

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 h...

Well, it was indeed a long weekend for the West family, and despite the long weekend the kids really did hold it all together quite well.  They all enjoyed the Teen Nation Benefit Concert that was in Detroit and held to benefit the PHF.  Jason did an amazing job of putting this together with his employer being an awesome sponsor of it (GM, UAW) and getting the word of hydrocephalus out to its employees. The Teen Nation Tour has some great acts that they work with, and the kids are really incredible singers and do indeed have a vast array of musical styles.  Which is great since it would appeal to a larger crowd as well. So I think I will let the pictures speak for themselves in this post. I will say, Willow had a blast, and still talks about her 'rockers' (Rebelmann) and that she got to play their drums and cymbals after the show and that it was cool :) flier that went out to everywhere  Willow with Hawke and friends Faith Marie and Willow dancing ...