Time has become such a different word for us lately – it’s been only two weeks since this is all began which isn’t alot of time, but it’s felt like an entirely different lifetime for us. Every day, hour, minute has been something we can’t quite fathom but yet time keeps moving forward.

When we learned of the exact diagnosis of Kai’s disease and it’s current state in his body, we knew that time was not on our side. In these past two weeks, Kai has undergone many surgeries, procedures, tests, and many other things that have been in efforts to give us more time. More time with Kai, but really more time to see if we can do something to fight this disease. 

Late last night and through this morning, we’ve learned that nothing here on earth will cure Kai. The disease has caused too much damage. God can heal Kai, and we still do believe in miracles, We actually have been reflecting on how many miracles we’ve witnessed throughout this experience. However we of course do not know if it’s God’s will to have him stay here on earth with us for a longer time, So we are now doing everything we can to ensure Kai is as comfortable and peaceful as possible.

As mentioned earlier, Kai has been resting peacefully. Kai has still been resting and we’ve been able to leave the ICU and onto the oncology floor where it’s more calm and peaceful and where they’ve set it up so family and friends can be comfortable and come and spend time with little Kai.

We’re cherishing this time. We got to spend hours holding him today, reading to him and talking to him. He’s surrounded by family and friends. It’s time well spent. I still hope and wish that Kai would wake up and have an amazing story to tell us and the cancer would be gone – what a powerful testimony this would be. But I also know that his story already is such a powerful testimony of Love, Life, and Faith. We love Kai so so much. So much. And we will continue to love him and be by his side and tell him of all the love and prayers for healing and peace that yall are giving him. Thank you so much for that gift!

Kai returned from surgery yesterday and was very peaceful. He was tossing and turning and pulling his blankets over his head just like he does at home (he’s notorious for putting his stuffed cat, named Cat, over his face so when I look at the monitor I just see these two beady stuffed cat eyes). As the day went on we noticed that he was still having some swelling so they took him back to have a CT scan to determine if the shunt was working as it should. The CT scan revealed that the shunt is working as it should, however he is still having trouble with his respiration rate and heart rate and hadn’t woken up from surgery. These are signs that it is the cancer causing him the swelling and issues in his brain.

We will be meeting with the neurosurgeons and the oncologists this morning to discuss more about possible next steps. But for now, we are thanking God for being so merciful and providing Kai with such peace and pain-free rest which he hasn’t had in so very long. He has been resting so peacefully and we are able to hold him and sit with him and last night I squeezed myself into his bed and got to sleep next to him and we had a peaceful night all together.

This morning he’s moving around a bit and opening his eyes from time to time and swatting at the nurses and doctors when they mess with him and so we’re just focusing on spending the day with our sweet baby Kai and plan to read stories and sing songs and help him think of all of his favorite things.

We love our little Kai monkey so much and our hearts are bursting and breaking at the same time with this love, and we just keep praying for comfort, peace, and healing and are so grateful for our time with the little guy who has incredible fashion sense (see below fashion ensemble of swaddle blanket wrap, diaper and dinosaur bib). And currently he’s refusing to keep his hospital shirt/gown on, I think he wants us to check out his muscles.