A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

12:32 AM

Day 13 - Monday

Some more ups and downs today. Everything we are doing is focused on getting Sam to eat. He has a tray full of dozens of different types of bottles, nipples, straws, and sippy cups - all potential delivery vehicles for the food he won't eat.

They even tested his CRP and renal function today, changed his antibiotic to try and get his appetite started up.

He had another feeding tube put in this evening, we just couldn't wait any longer. He's been eating a little better, but when you're measuring what he eats in milliliters rather than ounces, just to make it sound like a lot of food, you have a problem. On the bright side, he did actually take about three ounces tonight, over the course of a couple hours. The best news is, he took it from his bottle. The tried and true bottle he's been using for months! So, there is hope he'll re-acquaint with the bottle and eat. We are fine with it either way, we just want to get our baby back home.

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