Amendment: Regarding Lab Work

 I received a call from Aggie's genetics dietitian yesterday. On behalf of the doctor. Baylor University has made an amendment to one of her labs drawn in 2012. They have found another mutation. The same mutation was found in an infant baby girl who died shortly after birth. Therefore they are more concerned of the progressive nature of our circumstance. It was all read to me over the phone, it will be mailed soon. There is no name other than the specific gene numbers and letters. It does not change her diagnosis of PDCD or treatment. It basically doesn't change anything other than potential for quicker progression. We already know Aggie has a progressive disease, and will not live a "normal" life. So we will keep on living and loving her. It did cause the doctor to express further concern about the other girls being tested (being genetic in nature and X linked), which has been denied by our insurance.  We have appealed twice with no luck. Perhaps the new information may help it to go though? The Genetics doctor wants to see us again. Not urgently. So we will plan a trip to Birmingham soon. I always hate spreading news like this, but I know everyone likes to know. 

On an encouraging note I just want share that some of the biggest things God has taught me though all of this. 1.He hears our prayers. When I was pregnant with Aggie God laid it on my heart that she was not going to be "normal". He cared so much for me that he prepared my heart early. I started praying for her then that he would have mercy on her, heal her and sustain her life. That Aggie is alive today and not with the Lord, like the other child with her mutation attests to His hearing and answering those early prayers for her. 2. He cares much more about our holiness than our comfort. It is very uncomfortable at times walking this road He has laid our for me, but it has been a huge source of sanctification and making me into Christ's likeness. 3. He cares more for my child than I do. He created her. I have laid her at His feet many times for surgeries and tests, in-trusting her to His care. Her creator can provide for her in innumerable ways that I can not. 4. It has caused me to face fears that I thought might kill me. And remove my children as idols so that I might see my savior more clearly. For that I am thankful.