The Daily Kaleb

Friends,

Kaleb is approaching 48 hours post-surgery and he continues to make very slow progress in healing.

Where He’s at Today

They have been able to reduce his blood pressure medication, his ventilator settings, and the nitric oxide.

He is draining off the excess fluid buildup.

He is on and off the pace-maker. It’s like a game of tag. Kaleb’s heart wants to keep fighting against the pace-maker, so they will make adjustments and his heart will be back in sync. His heart is in natural sync long enough to take him off the pace-maker, then he get’s out of sync again so back on the pace-maker he goes. All that to say his heart sync is showing signs of good progress.

What’s needed to close Kaleb’s chest up:

1. He needs to drain more fluids.

2. His ventilator settings need to be minimal.

Genetics Testing Results

Yesterday we met with the genetics team to discuss the results from the extensive tests…

Praise God, EVERYTHING CAME BACK NEGATIVE!

We were very surprised, although the genetics team said negative results happen about 60-70% of the time. It doesn’t mean there isn’t something wrong with his genetic code rather it means that with current technology and research in genetics there is no known genetic syndrome they can connect to his condition.

His malformation with his duplicated thumb (which you might have noticed in the pictures) isn’t something to be concerned with. I’m thinking we redeem it by making him the ultimate thumb wrestling champion. That’s my (Todd’s) take.

They suspected he had a skeletal dysplasia in utero. His arm and leg bones from the anatomy scans in utero were originally said to be measuring smaller than those seen in dwarfism. However, they have since confirmed from an examination and x-rays that this is not the case; all his arms and legs are normal in size.

His malformation with the vermis in the cerebellum of his brain has been confirmed by ultra-sound post-birth. However the extent of it is still unknown as we will have to wait for an out-patient MRI later down the road. At this point it’s the least of his concerns.

How are we doing?

Autumn is in full glory here; the trees are ablaze in a full spectrum of color, the weather floats between 60 and 80 degress, and the fragrance of leaves and earth fills the air. We are so thankful to be surrounded right now by such incredible displays of our God’s creativity and kindness. Our hearts are full…and we are exhausted. Each day after a brief night’s sleep, we face an onslaught of decisions, trying to balance hospital visits, time with the kids, time with the Lord, time with each other, work on GCC, work around the house, and so on and so forth. We feel the need for wisdom and perseverance these days and would so appreciate your prayers towards that end!

Love,
The Born Family