The testing begins...

Good morning! Sarah here. Boston says "hi" as he sleeps contentedly (his only 4 jobs being: eating, sleeping, pooping, and wait for it...awesomeness). We have had a magical first few days with him. It is hard to believe that he was born only 54 hours ago.

We were transferred to Children's Mercy yesterday afternoon around 3. Thanks to everyone who called or stopped by while we were at St. Luke's. It was a whirlwind of activity as we crammed as much visitor time as we could into his first day and a half in the world. Last night I got to sleep about 5 hours, but before that I had slept maybe four hours since Monday night.

Medical news: Boston's initial urine test at St. Luke's showed that he had large amounts of protein in his urine, which was sufficient for the kidney doctors at Mercy to say "Okay, yes, there is something wrong with the way his kidneys work." Having large amounts of protein in your urine is the hallmark sign of congenital nephrosis. Our plan for testing and care has not changed -- we will still need at least a week here at Children's Mercy to get a more accurate picture of what is going on with his body -- the doctor's look at trends, not snapshots, so while we will try to be as forthcoming with the updates as possible, be prepared for us to not know anything certain for a while.

More medical news: while Boston does have a large amount of protein in his urine, and thus likely has congenital nephrosis (which would mean a kidney transplant), the other signs of "Pierson Syndrome" (which can be just congenital nephrosis or congenital nephrosis and other things) are not presenting initially. His big brown eyes do not have the "pinpoint pupils" but we are going to have a full opthamalogic exam next Tuesday. He has good muscles and reflexes. He is eating really well. All of these things could change, as this syndrome can be progressive (things not being there at first and then showing up later).

Support: we would appreciate it if people would not ask us for medical updates or about what is going to happen with Boston's condition. As far as we are concerned, he is just a normal baby. We get comments from the doctors and staff that he is a normal baby; that he "looks great" and is doing all of the normal things that normal babies do, except he has a large amount of protein in his urine. It is too early for us to speculate about what his tests could mean; it will just take time to know anything. The earlier posts in the blog have more information about congenital nephrosis and the tests that are going to be done this week. Also, while this news is not "optimal," it is what we were planning for and we are proceeding with the plan that we had set up before he was born. We are in good hands with the doctors here. We don't want people feeling sorry for us or treating us or Boston any differently.

Fun news: Boston really is awesome. He is beautiful and smells good and loves to cuddle. He knows his momma and his dadda and while he spends most of his time sleeping, he also has alert times when he just stares up at us. Yesterday he was awake and kept trying to grab Clark's shirt with his hand, but Clark was not interested. I don't think Clark has figured out that Boston belongs to us yet. I am sure that day will come. :)

Communication reminder: Children's Mercy is a blackout zone for cellphones, so if you get sent to voicemail, you can bet that we're here.