After the pulmonary appointment, we drove to Children's in Seattle to meet with our geneticist, Dr. Hannibal. We had the opportunity to ask the questions that have been plaguing our minds for days. There was not a whole lot of new information about her diagnosis, but it was overall more of an encouraging discussion. Dr. Hannibal stressed that because of Emri's unique deletion of exons within her FBN1 gene, we have no way of making specific predictions for her future. Yes, the historical course of neonatal marfans has not proved to be encouraging, but there have been success cases, and there is hope, scientifically speaking. We have previously recognized the hope within the power of our Lord, but we are now realizing that there is more hope than we thought within the realm of science as well. We remain realistic about Emri's prognosis, but because her condition has already proved greater than many others with the same diagnosis, we can also be cautiously optimistic.
We enjoyed Emri's smiles, giggles, and energy today as we met with nurses and doctors. She was flirting big time with her geneticist and very much enjoyed being the center of attention for most of the day. She is now over ten pounds and looking more and more like a little girl. I can't say enough how much of a blessing she has already been in our lives. We continue to soak in every moment we have with her. Its funny...you'd think this would prove to be the most intense, stressful time in our lives, and although a certain amount of stress is inevitable, it is also the most joyful time in our lives. We continue to THANK GOD for the peace we have been granted, and the hope He has given us through the sacrifice of His one and only son.