Summer 2018

We are well into summer here at our home. It is a slightly different dynamic than in years past, but Willow is doing great!

Willow finished first grade and will be moving on up to second in the fall. She was in girl scouts this year and really enjoyed that. She did really, really well in school. I am going to make a slight brag on her academic success which I try not to do (often), but then I go back to when we were given her diagnosis (which we now know was wrong), but I go back to that first day sometimes just to put things into perspective.

We were told Willow had no brain. Nothing. Just a brain stem keeping her body functioning. The doctor said there was nothing he could do, and to enjoy the time we have with her. A few months later, another doctor looked at a second MRI and realized there was something off with the first diagnosis and we placed a shunt. Guess what?!  She had a brain!! But we still had no idea on what type of damage it had suffered.

Well, in Michigan, as I am sure is standard in most states; there are tests mandated by the state that schools have to give. My sweet, silly, crazy, off the wall Willow scored way above grade level on all her tests. Math and reading are off the charts! She decided to spend free time this last school year teaching herself multiplication! Why?!! LOL I am not a math person by any means, but I did let her have at her fun. While she can read and understand at a higher level, it isn't her favorite thing to do. She would much rather mess around with numbers than words on a page. So, we do struggle to get her to read, even easier books to build her confidence.

All that to say, no matter what a doctor says when you get the diagnosis of hydrocephalus, you truly never know what will happen. It is an under researched condition, with no cure at this time, and only brain surgery as its treatment. With that treatment, it has a 50% failure rate in the first two years of placement! Seriously, ridiculous.

Here are some crazy Willow pics from this year. Hope you all enjoy, and have a blessed summer



 

 


 

 

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