Mic-Key Button
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.
Comments
I find it inspiring, if that's the right word as I know that sounds kind of funny for such a topic, that you are being proactive with this decision. Ironically we are facing the very same thing right now. This summer, rather suddenly something changed with Sasha's swallowing capabilities, and I know at her neuro appt. next month I'll have to bring it up. It would be irresponsible not to, as tempting as it may be to stick my head in the sand.
I'll be eager to learn your thoughts on the surgeon and hope this moves as quickly for you as it can or as you would like it to, so that the runway for emotions is that much shorter.
We've been thinking of you guys a lot. It was SO great to see you in Boston. xoxo, Joanne