It seems like just when things start looking up, something happens that throws us off. On Tuesday night, Annie (Samantha's occupational therapist) came over. She discussed with us the fact that when a child's head stops growing, it typically results in low life expectancy. With microcephaly, the head size is smaller, but it still continues to grow. Samantha's head hasn't grown in about 12 months now. This has always been a cause of concern for us, but we were just happy that she was progressing. We had been told that this was the most important thing. However, as much as she has surprised the doctors and specialists with her development, this doesn't necessarily overshadow the fact that her head isn't growing. Over 33 years of experience, Annie said she has never had a microcephalic child with such a small head, but she has also never had one that developed and learned so quickly. She said, "Hands down, Samantha is further in her development." That is comforting to a degree. I talked to our pediatrician who said, "I don't think we're talking days, weeks, even months...but I don't think you have years." Annie told us of a family who had 4 children with microcephaly. 3 of those died. The youngest was 6. It's painful to think of our family without Samantha. She has made a permanent mark on our hearts forever. But, until we know more, we don't want to think about her dying.
In the meantime, we ask our family and friends to continue praying for her. It's important that we control the seizures. Because her brain is so small, it is quite possible that these are harming her. It's important that her brain grow. We are praying that those 2 things will happen, but that we also will be led to the right doctors, medicine, or whatever else may help her. For those of you able and willing, we will be having a fast for her the first Sunday of November, praying for those things, as well as strength, increased faith that God has a specific plan for her, and that we can align our will with His, 100%.
Samantha has changed our lives in so many ways. She truly brings so much happiness, light, and love into our little home.