Monday, September 4, 2017

Hydrocephalus Awareness Month

I spent the morning going back through Willow's blog, Willow's Wishes reading the beginning to her journey with hydrocephalus. There are things that happened that I have long since forgotten. Struggles, emotions, thoughts, feelings, questions, diagnoses all but left in her history. It is so absolutely AMAZING to see what she can do today, ALL that she can do today is attributed to God.

I have thought a lot about this month, September and what does it mean to us. It is amazing how this month has transformed me, for the last 6 years. This year, it once again takes on a deeper meaning, a deeper notion of wanting to share why this month and every day is so important to us in the West household.

Let me take you back, to Willow's two month check up: She wasn't tracking or following my face or toys when we moved them from left to right, she would still cross her eyes, even though the doctor said by this age they shouldn't be. She would not bat at toys, instead, she had a head tilt that while it seemed quirky was just off enough to catch the eyes of a few friends who said we need to look into that. The doctor agreed and ordered an ultrasound to be done just a few weeks later, those results were that she has hydrocephalus. Our pediatrician called us crying, not knowing that this would be Willow's story. A week after this, we would take Willow in for an MRI that would tell us these results: significant loss of white matter, no evidence of pressure from the fluid as the brain didn't develop properly, she was indeed born with this condition, and we should expect fairly global delays. The official diagnosis - Hydrocephalus Ex Vacuo (Hydrocephalus ex-vacuo occurs when stroke or traumatic injury cause damage to the brain. In these cases, brain tissue may actually shrink.) According to the National Institute of Health: But you see, this type of hydrocephalus generally affects adults, but we didn't know that back then. We were just told, over the phone, that our daughter didn't have a brain, and the fluid was keeping her skull from caving in. 

Fast forward to her four month check up, where there are more delays noticed and the doctor notices that her head circumference had grown six centimeters. Now, according to the type of hydrocephalus she was believed to have, her head size should not grow larger. Yet it did. Our pediatrician knew something wasn't right and after conferring with others in her office called me and said take her to Children's ER, they are waiting for you. So off we went, where she would endure CT scan and vital checks and finally after many hours (about four) a neurosurgeon walking in, saying we are going to prep her for surgery as she is getting a shunt placed tonight. After a crazy whirlwind hour of getting my husband and other three children home and heading to the hospital, we all got to see her and give her a kiss before she was wheeled into OR. After the surgery,  the doctor comes out and would give what would become known as his usual speech, "no known complications', but also informed us of a tiny bleed out that 'shouldn't cause issues' we were able to see her again. This was just the first of what would become many surgeries she would go through. 

September use to be known as the month all the kiddos would go back to school, the month where the weather got a bit cooler, hoodies came out, you would watch a football game on Saturday, and dread summer clean up around the house getting it ready for the winter. Now, September means we spread awareness of a condition that affects our home daily. With each headache we wonder, with each fussy day Willow has, we start to see if there are dots that need to be connected when she is more tired than normal, we question what has she been doing. September is a month, where we share her story, along with so many other's and raise awareness of a condition that could hit anyone at any time in their lives. Do you know about hydrocephalus?