The Daily Kaleb

On December 3rd Kaleb turned 2 months old.

Advent

This Christmas season, as we wait to welcome our precious boy home, we're reminded of the centuries God's people waited for the coming of His Saving Word, only for Him to appear in the darkness of night as a helpless baby. 

The Timeless One woven into our time, only to wait hour after hour, day after day, year after year, for His coming death. In our place. For our sin. For our LIFE. For our JOY. 

And so we follow in His footsteps, each taking up our cross of suffering, self-denial, and weakness, the cross He has chosen for each of us, and we set our gaze, waiting for the coming bliss that Jesus willingly suffered to share with us—when all that's broken and wrong in our lives will be made new.

Kaleb is doing well. He is a couple days away from being completely weaned off of all sedatives. His NJ tube (feeding tube through his nose and into his small intestine) has now been replaced with an NG tube (feeding tube through his nose and into his stomach). They will see how he tolerates stomach feeds and then begin intermittent feeds (instead of continual) to make sure he can process that. They will also start trying to feed him by mouth soon. 

So much progress to thank God for! 

MRI Findings

This afternoon, the Neurology team came in to review their findings from an MRI taken yesterday. 

• the MRI confirmed what the ultrasounds found: Kaleb has a Dandy-Walker malformation. The vermis (located in the cerebellum) is only partially formed. With this malformation fluid tends to build-up in that area, they noticed the beginnings of this on the ultrasounds and the MRI. This fluid build up, if it increases, may need to be addressed by a Neurosurgeon in the future. We will be connected to one at Boston Children's who will check in on him in the future. 

• They also found a second malformation in his brain. On both sides of his brain on the outer surface the neurons have developed perisylvian polymicrogyria. As best we understand it, the folds in his brain on both sides (more so on the right side) developed as many small folds instead of fewer normal size folds. Time will tell what affect this will have on him, but there is an increased risk of seizures down the road and other

• Both of these malformations carry an increased risk of motor and cognitive impairment.

What do we do with this new information? Nothing new. The same thing we have been doing. We cast it upon the Lord, our good Father and Shepherd who is watching over us and leads us. He will not do us harm. We know all the paths He has planned for us are steadfast love and faithfulness (psalm 25:10). The future continues to remain hidden to us, but it is crystal clear to our God! And the only thing we know for certain is He will remain steadfast in His love and faithfulness for the rest of our days. How can we not trust Him who gave us the fullness of Himself in Jesus His only Son? 

Please Pray:

• For God to strengthen and comfort Kaleb as he weans off his last sedative over the next few days (which has been particularly tough for him, and tough for us as we can't be there to comfort him very much)

• For God to strengthen his lungs so he can breathe more efficiently

• Pray he's able to feed by mouth quickly and efficiently once he's off his last sedative, so he can come HOME!