Robbie is just learning to blow raspberries. what he's really accomplishing is slobbering A LOT. I hope this video uploads bright enough that you can see him doing it.
On the feeding front:
Things haven't progressed well. They've actually regressed. We're back to him taking about an ounce and a half at a feeding. The rest goes in his NG tube.
Life with the NG is not so fun. He's constantly getting ahold of it and yanking. Even I managed to catch it a few days ago and almost rip it out. And putting it in it traumatic.
Our OT is concerned we're doing more harm than good with the NG because it's giving him so many negative feelings. He already cringes when you move towards his nose. Eventually it will get to his mouth, too. So this can't continue.
We had our follow up with the doctor today. We see the surgeon on Wednesday and will schedule the G tube placement from there.
Today's appointment was actually with both the nutritionist and the NP in the GI's office. They both feel that the G tube won't be super long term. Because he took so well to solid food, they think that once he reaches the point where most of his calories can come from solids versus milk, we will be able to get rid of the tube.
They said their plan is that as soon as the tube goes in, we're working on getting it out.
He weight 10 lb 13oz at the office today. I had actually fed him on the way to the doctor, so that was a little heavy. I weighed him on the home scale tonight and he was really 10lb 10.5 oz. That puts him up 11+ oz in 2 1/2 weeks. Considering he only gained 5 ounces in the month preceding that, it's obvious that things are going better. We just have to get the food INTO him.
For now, please pray that the surgery goes smoothly. I'm really nervous about it. He took 3 days to wake up from the last one.
There are many reasons this should go smoother.
-He's almost triple the weight he was then
-the surgery is about 10 minutes versus the 2 1/2 hours previously
-we know he reacts strongly to the anesthesia
-he's having way less done so he'll require way less pain medication afterward.
but I also know anything can happen.
1 year ago