Teeth updates, fat-soluble vitamin deficiencies, and eating

Peter's teeth color has been discussed many times and research suggests that there seems to be some evidence that bilirubin-stained teeth sometimes respond to bleaching.  As I wrote in an earlier post, we were planning to give bleaching a try.  Around February, we tried bleaching Peter's two top front teeth several times through the local dentist as a trial to lighten the discoloration.  Unfortunately, and though not completely surprising, somewhat disappointingly, there was no color change at all.

We are trying Peter on pancreatic enzymes as of a couple weeks ago.  Peter's fat-soluble vitamin lab values remain low and seem to be falling over the last several months, despite the fact that he is taking in high doses of vitamins A, D, E, and K.  At CAIR in Februrary, we discussed his stool and tests were run to see if his pancreas is working well.  The lab values for the pancreas (pancreatic amylase, I believe) came back normal as they have in the past.  Dr. Kamin said there is research that with short bowel, some people improve their fat digestion with extra pancreatic enzymes, so it seems worth a shot to see if they help him.  His stool is looking more normal and we should be checking labs sometime soon to see if his fat-soluble vitamin levels are responding as well.  He doesn't seem to be putting on any weight as of yet, but we are excited about the potential of correcting the vitamin deficiencies anyway. 

Peter is continuing with feeding and occupational therapy to try to improve his eating.  He had been chewing in such a way that was fatiguing him early in his meal and would often pocket his food and even gag at times.  The feeding therapist feels like he has improved the chewing skills well, and we are in OT now trying to help to desensitize some of the eating reactions/resistance he has.  Peter repeatedly has stated he wants to get rid of his G-tube, as it leaks and hurts with some frequency, so we started these therapies to help him work towards that goal.  He takes in 1000 calories of formula through the G-tube overnight, so it is still a long road ahead before he can fit in that many additional calories in during the day and get rid of the G-tube, but we are at least making some progress.  As we go along, his short bowel symptoms may put a halt to how much he can eat and make it so the overnight feeds need to continue, but at least the ability to chew will not and perhaps he will enjoy eating more along the way now that his eating skills are improving.

We got the approval from the CAIR team that Peter can wait another 6 months before going to Boston again.  Twice a year visits seem like a luxury compared to 6 to 12 visits a year!