I always thought my husband was smart but now I KNOW he is smart. My love and respect for him has increased immeasurably through this process. He is a leader and a fighter.
He has spent the last week researching on behalf of our lil' girl. He is retaining knowledge, questioning authorities and driving me nuts by using words like "glycine cleveage." Jer set up a 'Google Health Record' for Pinny complete with detailed documents, test results and videos. He bought medical journals and contacted those who have written them to view her online health report. We now have those who are most familiar with glycine encephalopathy (one at Johns Hopkins, one at Cincinnati Children's and another from University of Colorado-Denver) on our case.
We are waiting for more test results before moving forward in pursuing a second opinion. Please pray for wisdom!