God's eyes

The 4th of July is always one of my favorite holidays, lots of free entertainment (we saw two rounds of fireworks) and time with family (plus I like doing crafts to get ready and planning the kids' outfits). At the parade, a little boy from a neighboring house came up to me while I was holding Emily and asked if she was a real person. He then told me that "she looked strange", and made all sorts of funny faces, like she was an alien or something. He left, only to return, making more of the same crazy faces. Thankfully, I don't think Emily noticed, and my stepmom shared a kind word with him :). I laid in bed last night, my heart just breaking for poor Emily, who will have to endure the questions, and stares for all her life. Today she asked me why God made her so small. I told her she was beautiful, and she said, "so are you Mom". She has God's eyes, and I hope she always will. God made each and every one of us, according to His plan; He designed every last fiber in us. He doesn't care what we look like, the shape of our body or what color skin we have. All He cares about is our soul. I pray that God will protect Emily, both her body and mind, that she will see beyond her appearances, and others. I pray that all the kids will see others with God's eyes.

And speaking of bodies, I finally heard back from the kidney doctor, concerning the x-ray and bloodwork done a few weeks ago. I have done very little research and she did not have a lot of information, but she was forwarding the results to NIH, who will hopefully be able to fill us in a little more. Basically, what she was able to share, was that the x-ray showed a condition called luckenshadel. The amount of osteoblast in Emily's blood is low, which leads to a defect in the bone formation. Luckenshadel is incomplete bone formation/growth in the skull. Unfortunately, she said there is nothing they can do on their end. I am very discouraged, but I am hoping to get a few answers on our trip this week. Emily is pretty upset about going to NIH this round, and neither of us is looking forward to the bloodwork that has to be done (they do a 2 hour glucose test, amoung other labwork). Emily has another liver ultrasound, we will meet with the different doctors, and we are planning to see a few sights during some free time. I will be sure to share more photos when we return.