Since the Nissen and g-tube surgery Calvin developed some complications. The surgery wrap loosened and he began to continuously gag and vomit. His hydration levels were becoming a big concern. He is now on the feeding tube only (no solids by mouth) on a slow drip and his vomiting has nearly ceased. This is due in large part to a new anti-convulsive medication he's on.
We are so thankful that he can now tolerate his feeds. Instead of him (and us) waking up at all hours of the night from his retching, he is now sleeping very well. When he cries we just reposition him (he can't turn or roll at all) and he settles back into sleep. The morning sure looks a lot brighter when you've had more than three hours of sleep!
Overall he seems to be doing well. He had a bout of pneumonia last week that we were able to catch in the beginning stages (thanks to the wonderful care of Brookville Pediatrics and Spectrum Health) and he is doing well with treatments for that. We can't put him down a lot but his comfort level does seem much better since the vomiting has nearly stopped. Thanks so much for praying for our little man.
In other (big) news, it seems we may actually have a diagnosis for Calvin, something more specific than cerebral palsy, brain damage, muscle disorder, etc. It is something called lissencephaly. I'm more sure of it that I'm sure my name is Kara. My dear sister had to listen to me go on and on this week as I discovered more kids like Calvin! (Thank you, Kristin!) It is a very rare brain disease but the profile fits Calvin to a tee. We have an appointment with neurology next week Tuesday and I hope that we can receive confirmation.
I have to share this sweet video of Calvin. This may be the happiest I have ever seen him. I sound absolutely ridiculous on the video, but hey, I'm a mom. I hope it makes you smile as much as it makes me smile. Like Sophie said, "Oooh, mom, I love him so much I can't even breathe." :)