The Challenge Ahead

One of the things we've had plenty of in the last two months are diagnoses. We quickly learned that they come and go, only valid until the next test, which would usually prove the previous one wrong anyway. Because of that, we didn't want to share too much info about some of Luke's longterm issues and add drama where none was needed. From our perspective, Luke's most pressing needs once he was born was his ability to stabilize and then thrive.

Thanks to everyone's prayers, we have witnessed Luke's truly remarkable recovery and transition to a totally normal life at home, despite the fact he wasn't even supposed to be born for another two weeks.

His long term picture remains a bit unclear, but we wanted to share what we know and appreciate the fact that you will continue to hold this little guy close to your heart.

A few weeks ago while Luke was still in the NICU, doctors gave him a brain ultrasound and noticed an abnormality that led them to give him an MRI. Neither of us were present for the test and it made for a rough night as we had to wait until the next day for results. The next day the doctors had a chance to look at the film and diagnosed Luke with agnesis of the corpus callosum. The corpus callosum is a thick band of fibers that essentially connects the right side of the brain with the left side.

It's a fairly rare thing but not so rare that no one had heard of it. The effects of not having the corpus callosum vary greatly. On one end of the spectrum are people who live functional lives and may not even be aware they are missing it. On the other end can be various forms of retardation.

As far as where Luke falls on this scale, it is impossible to know at this point. All we can really do is rule things out as he grows and develops. Thanks to some wild chromosomal test, we learned today that Luke's condition is all part of a larger genetic syndrome called Greig Syndrome, of which he has some but not all of the typical conditions. Feel free to look all these things up online and then get scared, as that's what we did. But again, no one can truly predict where Luke will be in six months or one year or ten. Maybe he'll be slow to crawl and walk... but maybe not.

The first few days with this news were tough, but the Bible talks about how God gives "a peace that transcends understanding," and that has 100% been the reason we feel so much hope about the future. Luke is such a cool kiddo, who has fought through so much to be here. We feel up for the challenge, and also encouraged by how he has already proven everyone wrong time and time again.

With such a wide range of possibilities, we are of course praying for the best possible outcome and won't put limits on what God can do in any situation. Hillary has often said that she wanted 5 kids -- insert me shaking my head "no" here -- and once Luke's situation became clear, we agreed that God may be giving us a baby who'll need 2 or 3 kids' worth of love.