Jie has changed so much in the past few months; it is hard to convey the incredible difference in words. Her skin is no better, but with EB we know this is normal and to be expected. It won't get better. What is improved is her level of interaction, her trust in her caregivers and her physical development.
When Jie first came she screamed though most of her dressing changes. She was very withdrawn and did not find comfort in being held, rocked or sung to. Now her personality is really beginning to emerge and she's a delightful child to be around. She tolerates her dressing changes very well. And her social skills are so much better!
When you walk into her room (or even just pass by the door) she will look up and call out. If you don't reply, she will call out even more insistently. Once you speak to her she'll really start "talking" and you can tell she's so happy to have your attention.
But then sometimes she gets a silly, shy face, like she's embarrassed by all the attention.
But the best thing is when she smiles; her little face just lights up the room.
Caring for a baby with such serious medical problems is never easy. But seeing little Jie learn about happiness and trust makes it worth it, a hundred times over.