Home now from a very long day up at the Cleveland Clinic. Just about ready to pass out for the night, but I wanted to report that we were encouraged by what we learned. Though Nathanael has the skeletal markers for Marfan Syndrome, his heart and aorta are in great condition for now. The aorta is just the right size for his development stage, and there is no valve prolapse. The cardiologist wont need to see him for follow-up for another two years. We learned that there are other genetic connective tissue disorders beside Marfan Syndrome, and since his skeletal growth is off the charts, the doctor has recommended genetic testing to see if he matches the profile for either Marfan Syndrome or some other connective tissue disorder. He will also need an examination by an ophthalmologist to make sure his cornea shows no signs of detachment. The upshot is, we have no definite diagnosis of anything yet; we will only be able to rule out possibilities after genetic testing is done. However, we are praising the Lord that Nathanaels heart looks strong and healthy. We also praise the Lord for the prayers of our family, friends and church. We experienced Christs presence and peace with us today, and a safe trip there and back again. We truly do thank you all for your prayers and support, and will continue to appreciate them going forward.
Posted on: Sat, 16 Aug 2014 01:16:20 +0000
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