Monday, May 16, 2011

Waverly's Journey-Diagnosis

Waverly's Journey-continued from previous post

After she was born, her initial signs checked out well. There was a spot on her back that they were concerned about, and spina bifida was mentioned (one of the concerns prenatally as well). However, after a battery of tests in her first few days (ultrasound of her head and spine, MRI of her head and spine, EEG, EKG, and others), it was determined that Waverly has Lissencephaly (means "smooth braing") due to a Neuronal Migration Disorder. Basically, as her brain was developing, the nerves did not migrate to their proper place. Her mid- and post-brain appeared relatively normal, but her forebrain has fewer "wrinkles" in it, thus giving it the smooth appearance. In essence, she has less brain matter than she should. Because the forebrain affects motor and cognitive development, they expect Waverly to have moderate to severe deficits in those areas, including Cerebral Palsy, Mental Retardation, and possibly seizures. However, her basic functions should be normal (heartrate, respirations, etc.). It was determined that the spot on her back isn't a concern. Her spine does stop one level above where they'd expect it to, but they don't see any way that should affect her for now.

Of course, these are all predictions from the doctors. Ultimately, though, they say we will just need to wait and see who Waverly is. As she grows, we will see what this diagnosis means for her, what she can and cannot do, etc. As you can imagine, this has been life changing for us. From the very beginning when they had concerns about our baby, we have been trusting in the Lord to give us the very child that He created, and we still trust in Him that she is created just as He wanted her to be, and that she was given to us in His perfect plan. He does not make mistakes! It doesn't mean that it hasn't been's never easy to watch your child struggle. But we know that He has an amazing plan for her life.

We love this precious creation that God has entrusted to us. She is absolutely gorgeous, and we are all in love with this little girl. We hope that you are all able to continue with us on this journey, Waverly's Journey, as we see how God works in her life for His glory.

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