Tuesday, June 3, 2014

A bump in the road

There are just a few genes that have been linked to HLH and so far all of the ones we've tested have come back normal...until yesterday. We did a preliminary test for SAP and the results prompted a more specific gene sequencing test. The preliminary test is NOT saying he has the mutated gene, but it does suggest it-so last night we drew blood to send to the lab. If the SAP comes back positive we are almost certainly looking at transplant. If it comes back negative we are in the same 'wait-and-watch' boat we are currently in. Oliver's positive trends in his HLH levels and blood counts gives me hope that he can still get through this without going to transplant...as I write this Oliver is sleeping next to me. He is the calmest, most relaxed baby. He sleeps peacefully through the night and when he wakes he is all smiles! His little noises are soft and subtle and his eyes are inquisitive. He rarely complains even though he has plenty to complain about. Yes, we hit the baby jackpot! 

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