Final Blog Entry From Hillary

First off, thank you so much for your unending prayers. We so appreciate everyone’s incredible support and humbly ask that you would continue to hold Luke close in prayer.

We have had an amazing couple of weeks. According to our pediatrician, at this point in time Luke looks and is behaving like a very typical newborn. She said that if we hadn’t had the MRI in the NICU, she wouldn’t have had any idea that he was missing his corpus callosum. As we settle in with 3 kids (if that’s physically possible) we’ve been able to leave the house a bit more, we’ve gone to a lot of follow-up doctor’s appointments and have been enjoying life as a family of five.

Luke is very easy-going, happily puts up with the constant hugs and kisses he gets and loves his baths to the point of falling asleep during each one. Danny has deemed Luke as his “buddy” and would much rather hang out with him than his little sis who “messes up everything!”

Katie has a sweet spot in her heart for her baby brother, and I often find her kneeling over a sleeping Luke and saying in her sweetest voice “it’s okay, Mommy’s here.” After explaining to the kids that God make Luke really special by giving him six toes and that he may need a lot of extra love, Danny decided that he too had six toes when he was born.

We remain hopeful that Luke will develop normally as our faith has taught us to remain hopeful in all circumstances. We will know more in the months to come and will be looking for different developmental signposts from Luke. He is also going to start receiving occupational therapy as more of a preventative measure.

This past week I read such an incredible blogpost from the mother of my inspirational and dear friend Katherine Wolf. In it, her mom referenced a verse in John: “As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.” (John 9:1-3)

I was so touched by her post and shared this verse with Bob after reading it. Bob and I had read this before but had yet to think about it in relation to Luke. It is such an incredible verse and we feel it’s so applicable to us. In the nearly six weeks since he was born, we know from many of you how he has touched your heart and increased your faith. He's done the same for us. Pretty cool stuff for a baby who can’t even stay awake for more than 30 minutes straight. We will continue to pray that God’s work would never cease to be displayed in his life.

On Sunday, we ventured to church for the second time since Luke was born. As the church does just once a year, the end of the service was set aside for those who need healing to come forward and be prayed over. Not like crazy televangelist stuff, just a low key opportunity for extra prayer. Our incredible associate pastor, Pastor Care, prayed over Luke and anointed him with oil (which she was also able to do with him while he was still in the NICU). In her prayer, she referenced the same verse from John as above. Another verse she prayed is one of my favorites from Jeremiah 29:11: “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”

Another dear friend of ours, Allison, blessed Luke with a huge bag of diapers – each diaper has a label with Scripture on it. When we got home from church, I changed Luke’s diaper and the new diaper that I grabbed was labeled with Jeremiah 29:11.

We are so encouraged and know that God is going to teach us more and more as we grow closer to Him.

For the time being, we are going to cease posting updates on the blog but we will continue to periodically update our new family website with photos. We know that many of you may want more regular updates, and we’d encourage you to just email or call us directly. We’d love to hear from you.

Thank you again. We credit your prayers for all the blessings we’ve experienced over the last two and a half months.

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.