However, the DNC got there on their own :) The convention highlighted another family who has experienced nearly the same ordeal. Their child has HLHS - Hypoplastic Left Heart Syndrome - the same condition we initially thought James had. His actual diagnosis of DORV with hypoplastic left heart is very similar, and he will have the same series of surgeries. The worry they expressed to the DNC was one we hadn't even thought about - lifetime limits - which hopefully will never be a concern for us.
We are grateful every day that we chose to keep our baby boy and continue the pregnancy in spite of all the fears and uncertainty over his future. We are also glad that he's insurable and can have access to these otherwise unaffordable surgeries that are saving his life! I'm posting the link to the speech here because it's a great speech...and regardless of political beliefs or party affiliation, this is an important issue to know about and an important clause in the Healthcare Act to keep.
In more light-hearted news, we have discovered that James loves watching tv. Sesame Street and Winnie the Pooh episodes on youtube keep him riveted. He's also started 'talking' much more and has 'conversations' with us. He makes a range of noises and is delighted when we repeat them back. My next post will be a video of what our baby has to say :)
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