Monday, November 1, 2010

Emri's Day

    We arrived in Bellevue just in time for Emri's Pulmonary appointment this morning. The doctor talked to us for a bit, checked out Emri, and spoke her thoughts. She expressed concern about Emri's "pectus excavatum," or sunken chest, and was a tad concerned about her noisy breathing as well. Emri's ribs bend quite a bit when she breathes in and could potentially restrict her lung expansion or interfere with heart function. This would be reason enough for a correctional surgery, which hasn't been done often, if at all, on a child this young. We aren't jumping to surgery quite yet as there are a few tests that need to be performed in order to know if it is indeed necessary. The doctor wanted Emri's blood to be tested for her oxygen/carbon dioxide levels and an x-ray for today. The blood levels came back normal, which was encouraging! The x-ray revealed that a small section of Emri's right lung was collapsed, but the doctor did not sound overly concerned about this. Emri has a swallow test scheduled for Wednesday, a sleep test scheduled for somewhere in March or April, and another pulmonary appointment for six weeks from now. 
     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'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. 

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