National Hydrocephalus Awareness Month

I was going to do an August recap for you all, maybe even an interview from Willow about how DC went and her first week back at school; but life happens sometimes. So I was not able to get those things done. Instead, I sit here, on the eve before National Hydrocephalus Awareness Month penning a blog entry to do this first day, of a very important month, justice.

I have been trying to think of how I want to share information this month, via blog, Facebook, Instagram. Ultimately, I am sure I will share some things on all three. Please know that this month was a month that 7 years ago I knew nothing about. So if you don't know a lot about what hydrocephalus is, that is okay. Stick around and learn something! If you have your own journey/story with it, please feel free to PM me, or send email, or comments with your stories. I would love to listen. IF for some reason, you think you know a lot, have heard it all over the years you have walked along with us, then please feel free to skip through and stop reading, and let me just say 😝

I think ultimately this month, I will be sharing a lot because we have new friends joining us all the time, we have people who don't know Willow's back story. Even with the release of her first book (Willow's Last Surgery), there is still a lot left out. So, I will be sharing her story by either writing shortened versions of previous blog posts, sharing the beginning again. I will be sharing facts and figures this month and pictures. They may be hard to look at, but they are her reality. I say her reality because while we are the family members who walk alongside her on this journey, she is the one living it. Every day that she has a headache is a reminder that a poke for an IV could be in her near future. Every off day (we all have them, I know, we are cranky humans some days), but for her - the off day could mean a call to the doctor depending on surrounding events. That call to the doctor, means a new MRI, another trip to the neurosurgeon, and a possibility of another surgery. This is her reality.

Her reality is also set with challenges that we may not realize seeing as she 'looks so good'. While she does indeed love to show off what she is able to do, she also struggles with things like walking longer distances, balancing (which means bike riding), and quite a few others that we will share later. Tonight though, I would like to start the month off a bit early (maybe an hour or so, by the time I finish writing)... With a tremendous THANK YOU to her doctors, nurses, radiologist's, technicians, oh the list goes on and on. I want to say thank you because they all know Willow. Willow doesn't present with typical shunt malfunction symptoms, and so we have to watch her a bit differently.

With that, I will share the newest news.... Willow had an MRI done on August 24th, to check ventricle size. She had been having headaches, vomiting, and issues with fatigue while in DC and traveling home. Good news, her ventricles are normal and the shunt is working fine!
Bad news - they found something new, a spot inside her brain stem. We do not know at this time what this will completely mean for her, though we have been given some ideas. We will have further testing done after Thanksgiving, there is indeed a valid reason for waiting that long and we are in agreement with that course of action. We are just asking that our friends keep Willow in your thoughts and prayers, as we begin to walk this next chapter in her life story.

For now - a picture to remind you all of how this journey with hydrocephalus started - the head tilt.


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