Having a child with PVL is a waiting game we were told. No one knows the effect the cysts in her brain will have on her development, motor skills or cognitive skills. I remember in the beginning charting milestones… or should I say not charting milestones. Milestones were so important to me. I would spend time every week going over what she was doing and what she was not doing, I was driving my self crazy and it really was not helping. Now, a year later, I pretty much stopped charting since there was really not much to mark down. “Pretty much” meaning that I look at it every 3 months 😉 Mattie is at a 6 month old level in most skills except gross motor where she is more like a 4 month old. Since Mattie was born 9 weeks premature, she is still very small for her age. Mattie weighs 16 pounds and just recently made it on the growth chart for weight (7% Woohoo). Even though Mattie was diagnosed with cerebral palsy in December, we are still playing the waiting game. We are not really sure what Mattie’s full potential will be.

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