Robin and Ethan visited the doctor this morning, and the news is definitely not good. Ethan is down another half-pound, and the situation is now much more critical than it has been thus far (he is now 10 months old and weighs over a pound less than he did at 4 months of age). Our doctor is gathering records and conferring, and we will be sending Ethan to one of the top hospitals in the country. That list includes Boston Children's, Cincinnati, and UCLA -- where he goes depends on what they decide after conferring as well as who will take us on very short notice.
If we can't get him in this week, we will be admitting him here locally in the next 36 hours to get a TPN feeding for immediate nourishment until we can get in to another hospital. This poses several immediate needs and concerns for us, including getting Robin and Ethan to the hospital and managing my work schedule and associated work travel while taking care of the other three boys. One of my sisters has volunteered to fly in and watch my boys (thank you Cheryl!!!), so that is a huge step in managing the travel and care. Robin is also scared to be going out-of-state and having to deal with all of the emotional burden so far from home.
Frankly, we are very scared. It is so disheartening to not know what the problem is, and to watch him get weaker and thinner week after week. We ask for your prayers -- specifically that we will find ourselves in the right hospital quickly, and that we will have a diagnosis and some sort of care plan.
Thank you all for your prayers and support thus far. We will continue to keep you updated. . . .