Another awareness month in the books

Well, September is National Hydrocephalus Awareness Month, and today is October 1st. So why am I still talking about it? I want to give a recap, a final thought that I wanted to do yesterday and instead was out of the home/office ALL DAY! There was no hope of even getting one sentence in yesterday. LOL Some days are just like that. My final thought or what was going to be my final fact is a retelling of Willow's journey with hydrocephalus. She has so many new friends now that she is older and in kindergarten that I thought it would be nice for all of her new friends to know why the PHF is so important to us, and why September we spend all month raising awareness.

Willow was born healthy. At her two month check up I asked the doctor if she could tell me why Willow tilts her head in such an odd way (you can see it here). We scheduled an ultrasound to see if there was anything serious going on, but the doctor said she doesn't think anything will come of it.  Well, the night of the ultrasound we got a call from our doctor after hours, saying she never would have expected this.  Willow has hydrocephalus. We had no idea what this meant, and while she tried to tell me what she could; she also said we need to do more testing (in the form of an MRI) and will be seeing specialists from there. They will be able to tell us more. So within a few weeks we were getting the MRI down and then a call from the neurosurgeon that said she has no brain! NO BRAIN!
Let that sink in, a phone call saying she had no brain.

That still haunts me to this day, even though so many things have changed since then. They said there was no need for a shunt, and nothing they could do. We just had to give it time.
She continued to thrive in her life, and at her four month check up her head circumference had grown 5 cm. and our doctor felt that was too much for someone who didn't have a brain. So, off to ER to see what we can figure out. 8 hours later and many tests and scans and talks with various doctors, a neurosurgeon walks in and says we are doing brain surgery and placing a shunt. Her first of many.

This next part of her story is a blur of sorts and yet quite long. The short of it is that between April 26, 2011 (her first shunt placed) and April 5, 2012 (here) she had 12 brain surgeries all shunt related. For various reasons, infection, malfunction, and oh guess what guys? She is allergic to the shunt as well, that caused 2 replacements alone. This girl who was not diagnosed while I was pregnant with her (so we have no 'reason' for her to have this), who was told didn't have a brain, but in fact does have one, is also allergic to the machine that is supposed to keep her alive. This is quite rare.

So, she would then go through a bunch of therapies for the next year or so. Physical therapy so she could walk, (which she did on her own after a year old), occupational therapy which she didn't need for long, speech therapy which she completed after preschool last year. Thankfully all of her therapists have been great people who have truly cared for Willow greatly that I believe it helped her soar in all areas. All of this from a girl with no brain right?!

School started for her around age 3 as she entered Head Start. She didn't quite take this well, so I kept her home again for a bit, and then at 3 1/2 sent her back to Head Start and she loved it! She went to preschool at 4 1/2 and flourished there, and this year is doing great in kindergarten. She has many friends, taking part in Cross Country, loving school, gymnastics (which she is learning on her own), playing with her friends and so much more. This girl has come so far in her short life. She also had 2 other brain surgeries this past March, and so we have restarted our clock for being surgery free.

All of this is a huge miracle for her and for us as her parents. There are stories of children with hydrocephalus not as great as Willow's. Many have other health conditions that go along with it, or are secondary to the hydrocephalus or the hydrocephalus is secondary to whatever else they have.
I became the Michigan state chapter director of the Pediatric Hydrocephalus Foundation in June of 2011. After all of Willow's hospital stays, and I love doing this. I do my best to raise awareness of the condition and to raise funds for a cure. There are many ways to raise funds for a cure and I try to do different fun things and events to help get our name out there. This condition can make the family feel very alone while they 'live' in a hospital for great lengths of time. So I try to let them know that there are others out there fighting with them.

I hope this quick little synopsis of Willow has helped her new friends have a better understanding of her and her condition. I know I didn't talk about her shunt and how that works and all, but that is a story for another day!


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