Friday, September 30, 2016

Microcephaly Day {2016}

Today is Microcephaly Awareness Day. This is the diagnosis that I feel affects Sarah the most, even more so than the Cerebral Palsy.

The Mayo Clinic defines microcephaly as:

We don't and likely never will know the cause of this condition in Sarah. Because we didn't see her current pediatrician until she was three years old, his suspicion is that she suffered from oxygen deprivation at some point in my pregnancy with her. There was nothing I could have done to prevent it, it was just something that happened.

Sarah's head is significantly smaller than the heads of other eight year olds. Her's is actually below the standard deviations or average. A typical girl of her age will have a head around 51 cm in circumference, while Sarah's is 47.6 cm. This puts her at about a -3.4 standard deviation and it probably will never catch up. I'm pretty sure it is the microcephaly that is the cause of most, if not all of Sarah's delays.

We have no idea of how Sarah's development will progress over the years. We have made the decision to not put her in a school and therefore I am her primary teacher and therapist. I find all my resources online and do my best to help her learn and understand the world around her. This week, she managed to trace a few letters in her workbook. The letters have little to no value to her but she was able to follow my instructions, hold the marker quite well and focused on tracing the letters. I'd guess in this area, she's about 3.5 years old developmentally. She loves things that I'm sure most 8 year olds are past. Curious George, Paw Patrol and toys geared for young preschoolers. But boy does she love life! Every morning I'm greeted with a cheerful "good morning Mom!" and for the most part, the days are filled with her endless chatter about all the things that are important to her. She loves her family and finds it important to know where everyone is at any given point. It is best when we are all home and she can keep track of us all. She is a delight to everyone we meet and I am so thankful that God placed her in our family to show us how to love in a totally new and wonderful way!

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