To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever. Psalm 30:12
Five months ago, Addie was diagnosed with Microcephaly and Pachygyria.
Microcephaly is a disorder that could result in mental delay, delayed speech and motor functions, seizures, difficulties with coordination and balance and other brain or neurological abnormalities. To say this news was devastating was an understatement. Eight days later we were told that in addition to Microcephaly, Addie also had Pachygyria, which meant that the diagnosis in and of itself was catastrophic and incomprehensible. This would lead us to a prognosis of severe delay and a bleak future.
Two neurologists agreed on the diagnoses and then her MRI was sent to Dr. Dobyns in Chicago for review. He is a geneticist, pediatric neurologist and world renowned for his characterization of human brain malformation. We've been waiting for five months to receive his evaluation back and we received the news today (these are only small parts to the emails, the other parts I am unable to go into detail about)....
Addie no longer has a "secondary diagnosis" of Pachygyria. Although based on his notes, Addie does have abnormal findings, he states: "I do not see any cortical malformation. Many children with this pattern only have moderate handicaps." The lack of cortical malformation is huge; I can't even begin to describe to you what joyous news this is! As for his comment about "moderate handicaps", we'll deal with it if the time comes; otherwise I will trust in God to continue to heal her. I won't lose hope and I won't let Addie down, I will never give up and I will prove those words wrong!
I emailed his response to Dr. Ness and Dr. Dudgeon. I'm anxiously waiting to hear back from Dr. Dudgeon, but I did get a reply back from Dr. Ness today. Her words were very encouraging: "Going through emails below, it looks like Dobyns doesn't think there is pachygyria or other cortical malformation...right now, it sounds like she is in the microcephaly group with the best outcome."
I can't stress enough how AMAZING this is. In the beginning, there may have been misunderstandings in the reading of her MRI, but I am convinced it was the power of prayer and GOD's amazing healing power that "dismissed" her secondary diagnosis. Please take a moment to thank GOD for the miracle HE blessed us with and PLEASE continue to pray for Addie. She will continue to surpass all odds.
