A New Milestone

March 21, 2021

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 describe them to us. She has learned what pressure feels like behind her eyes, and while that can be worrisome and lead to shunt issues, let's also remember that she too, will suffer from seasonal allergies, and sinus pressure just as many of us do. So, as she gets older, she learns the differences. As parents, we are doing our best to help her navigate all of this learning, and sensing what may or may not be a shunt issue. Reminding her, that when she had the need for her last revision, it had many symptoms. She had a horrible headache that Ibuprofen and Tylenol didn't help, she had vomiting, she was very lethargic, and all of this was while the MRI didn't show much change! She is a very sensitive young lady.

What shall we do with this newfound milestone in her life?! Well, without her knowing we will probably celebrate of course. I want it to be a surprise for her. We used to celebrate all the milestones with her as she was younger. Each year without a surgery brought cake, a half birthday was another reason to celebrate because we really had no idea what life would bring us. It has brought us an amazing young lady who loves life! She loves to problem solve, she loves math, she likes reading okay, but it's not her favorite. She enjoys school, even if it is virtual, she loves being with her friends. Outdoors is her favorite place to be no matter the season.