On Friday, Matt and I took Waverly to see a new GI doctor. We haven't been thrilled with the GI doctors thus far, so we took our chances with a new woman at CNMC. She was wonderful!!! She came into the exam room well versed in Waverly and ready to listen. After some discussion, we have decided to move forward with a feeding tube for Waverly. She is on a strictly pureed diet and she can continue to eat by mouth, even with the mickey button (feeding tube). We knew from talking with other specialists and families that moving forward with the tube surgery while she is healthy is so important. I have also been concerned going into cold and flu season. Because we want to avoid the PEG and move right to the button, we are going to meet with a pediatric surgeon later this week to work out details. I am not sure when surgery will be scheduled, but I would anticipate sometime within the next few months.
This has not been an easy decision for us. As parents, we want to meet the most basic of needs for our kids - nourishing them. And unlike other families where the feeding tube is a temporary device to get them through a difficult period, we know that for Waverly it is yet another reminder of her body deteriorating from Sanfilippo.