Tuesday we went downtown to meet with Clayton’s surgeon, his orthodontist and feeding specialist. They call it a “team meeting” appointment. I also met with a social worker who explained a bit about how the next 18 or so years of our lives would play out. She gave me this handy-dandy chart (a visual explanation of what his surgeon had already explained) which I found very helpful:
What a difference a color-coded chart makes!
Everyone was pretty happy with Clayton’s weight gain this week: 4 oz. in 6 days. Better. It is still challenging and sometimes frustrating getting him fed but there are more good times as he (and we) gets the hang of it.
We were disappointed that insurance authorization hadn’t come through for Clayton’s NAM (obturator) because it has to be in for at least 8 weeks before surgery. Hopefully it will be ready for next week’s appointment but we are still having lots of issues getting Clayton’s information right in “the system” so claims just keep bouncing around. Grrr…
So, we are still just taping him. We have figured out a base tape system which helps reduce skin irritation and we are already noticing a difference in the width of his cleft. Yay!
So, right now we’re looking at maybe mid-March for surgery. Maybe April. Dr. Farnworth (his surgeon) says there’s no rush which was reassuring. At the same time I’d rather have it behind us so we can move forward. I’m not a fan of looming change.
Once again, I was impressed and appreciative of how good and kind and caring all of Clayton’s caregivers are. I feel so blessed to have such amazing people watching out for my baby boy and helping us through this craziness!