Meet the McNeil Family

Meet the McNeil Family

Friday, May 20, 2016

Button Belly


This sweet little boy is getting a g-tube. We knew the time would come and after an aspiration event on Saturday that resulted in a pneumonia, I called the surgeon. The same doctor who placed Waverly's will do Oliver's and repair a small umbilical hernia he has had for years. Because of the pneumonia, we have to wait at least 6 weeks for the surgery. And given that we have a vacation scheduled, we put it off for about 8 weeks.

Liquids have been the major source of his problems. Our plan it to use the g-tube for hydration and medication initially. As the disease progresses, we will then be set for nutrition as well.

We have been down this road before, so we know how beneficial the button was for Waverly. We know this is the best decision for Oliver. It certainly reminds us that our little boy's body continues to be ravaged by Sanfilippo Syndrome.

All who have met Oliver instantly love his big round belly. And it has been rubbed many times by many people. I hate that his smooth tummy will be marred by the g-tube. I came to love Wavey's button belly and I know I will fall in love with Ollie's as well.


1 comment:

Joanne said...

Shannon, I am saddened to hear about Oliver needing a feeding tube. I want the progression of Sanfilippo to stop for him, it feels too close to already loosing Wavey, for this to now be confronted. Been thinking of you so often ever since reading this. xx, Joanne