Tuesday, June 20, 2017

Willow's story

Today, I am going to cross the lines in my blog a bit and share with you all, my six-year-old daughter's story. You may have heard it, or follow the blog I keep for her (Willow's Wishes), but today I am going to share on my personal blog.

Willow is our fourth child, and my pregnancy with her was not an easy one, but I am not so certain that all of the complications I had led us to where we are today. We will actually never know, but it isn't the part of the story I really want to focus on. You see, Willow was born Christmas Eve in 2010, and while I wasn't happy about having a baby so close to Christmas, you have to know her, to know that she is full of spirit! That was totally the right day for her to be born. She passed all newborn screenings, and was only 10 days early and had no need for any interventions. We stayed until the 26th and then were sent home.

As she grew, we started to notice a quirk she had. She had this head tilt that seemed awfully awkward and hard to imagine as it being typical newborn.

So at 2 1/2 months of age, we started a journey that we had never even heard of, knew nothing about, and sure as heck, was not prepared for.

Willow's story is quite long and involved, but I would like to keep it short and concise as I can. Please know you can go back to the link above and follow her journey more in depth at her blog (just start here). Willow was diagnosed with hydrocephalus at 2 1/2 months of age. Actually, to be more accurate, we were told she had no brain. In that little, tilted head above, is all fluid and no brain matter. At least that was what the first MRI showed. At four months of age, things changed and she had her first brain surgery. That is the only way to fix hydrocephalus. There is no cure, only brain surgeries to fix this condition. From the age of four months to the age of 16 months, Willow and I lived in the local children's hospital. During this time, she would average a surgery a month. 12 brain surgeries by the time she was 16 months old. Instead of walking, saying mama, dada, she was dealing with brain surgeries and a shunt that was supposed to be helping her, only instead it kept failing her.

We then had a great break and almost made it four years surgery free! This time allowed our family to grow into a new normal, allow us to be with our older three children again, and really live life. But shunts are unreliable, it is only a machine after all. Machines fail outside of the body all the time, why would this be any different?!  Hopefully, you can catch my frustration here. Shunts have a 50% failure rate within the first two years of placement, hence so many surgeries on our little girl. Not only that, she is actually allergic to the silicone that the shunt is made of, and so needs a special one to be placed in order for her body to not reject it. How special for our little girl.

Willow is now six years old, and not to jump too far ahead in our story, but she is up to brain surgery number 17. This doesn't count how many times she was placed under for tubes to be placed in her ears, tear ducts probed open, MRI's as a baby, future dental work (well, it's done now), etc. A few years ago, she started to wake up during a routine MRI, and they had to use emergency anesthesia. What happened was her body had become used to the dosage used at her weight, and she woke up. :( Those are some of the things that worry us, as well as how many more surgeries she will have.

Now, Willow is doing amazingly well, and we are so very proud of her. She has overcome so many odds, and her story may not be typical of what a child with hydrocephalus looks like, but it is her story. 17 brain surgeries and counting, just finished kindergarten and looking forward to an amazing summer.

Now, this really does give only a snapshot of all that she has overcome, it doesn't discuss the therapy she received all those years to get her where she is, it doesn't talk about a lot of the issues faced within the surgeries, etc. But again, if you want to know more about her personal journey, check out her blog. Just know that all of this led to our journey, where we are working with the PHF and I am a director here in Michigan. 

The PHF is a non-profit organization and you can learn more about that here. We host a walk in August to raise funds for the MI PHF that are then given to fund research grants for better treatment and better shunts. Information on our walk can be found by following this link, where you can also make a donation or register to join us. This year we are also going to DC to speak to congressional reps to raise awareness of the condition there as well. The more that is known, the better the chances are to find a cure. 

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