Ive been so blessed by all of your prayers and support through what has been the hardest, darkest, most difficult time in our lives, but because of prayer and Gods grace and miracles it has become one of the most beautiful times of wonder, grace and miracles in our lives. To be witness to countless miracles is a very privileged position to be in and such an awesome display of Gods love. We are now home and can go back to being a family just as we were before December 6th, when our lives were turned upside down. Things will be different, but thats okay. We will have numerous appointments and doctors, therapies and medicines. Its not how we had planned our life with our new baby boy but we still have him and we are so thankful. He has gained 7 ounces in 8 days, the yellow hue is leaving his eyes and skin, I have connected with a community of Alpha 1 Antitrypsin people and other mothers of babies with this disease and found resources and foundations. I even found a mother who had a similar situation 21 years ago with her daughter. She had a brain bleed and was told her daughter might die or would be severely brain damaged after her liver had failed to absorb the vitamin K shot she was given at birth. She is now in college in CA studying the liver and doing well despite the fact that she lives with Alpha 1 Antitrypsin Deficiency. There is hope and I will cling to it and trust God to work all things out for good for us because we love him.
Posted on: Sun, 04 Jan 2015 03:31:08 +0000
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