Jonah was born with Walker-Warburg syndrome, a rare form of Muscular Dystrophy that includes having very little brain tissue. Most babies with this syndrome live anywhere from a few hours to a few months. We don't know how long we will have Jonah, but we will LOVE HIM every second and trust God's timing. Welcome to the sweet moments of Jonah's life.
Wednesday, December 29, 2010
Snow and Surgery
Jonah's head continues to grow. He has shunt surgery today at 2:30, if I can make my way through the snow storm to get there:)
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