Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Tuesday, August 16, 2011

A Kind Doctor

On Monday we had our first appointment with the geneticist. This geneticist diagnosed Julia after birth but had not seen her since then. Since we changed our approach to Julia's care this summer this is one of many appointments we have coming up. I was very apprehensive before the appointment not knowing if this doc would be supportive or not. We were pleasantly surprised and more than a little relieved at how things went. This doctor marveled at the miracle that is Julia (my words -- hers were more along the lines of "extremely rare" and "unexpected"). After asking us tons of questions and examining Julia, the doc's recommendations going forward were the very same as our plans. It is encouraging to have an ally in her as we see various other specialists in search of surgeries and therapies that some may not see as necessary because of Julia's diagnosis. Some friends in the trisomy community have recently experienced a brutal appointment with a doctor who just could not see past the diagnosis enough to care for the living child in front of him. Walking this road is difficult enough without having to protect our children from the doctors who should be helping. Next up for us is the cardiologist in a few days. I am nervous about this one. The last time we saw him he did not think Julia was a surgical candidate. She was 2 months old then. Now she is 8.5 months and we are hoping for a more open evaluation. We already have an appointment scheduled with a second cardiologist from another hospital, so even if this one will not consider surgery maybe the next one will. Wish us luck!


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