Saturday, May 10, 2014

Still fighting but not fighting alone

Oliver got dressed up yesterday, along with pretty much everyone in the Bethel School System. Students and staff in all five schools went above and beyond and dedicated an entire day to our real life superhero.

Click the link below to see more photos of their superhero day. They even made NBC News! The Bethel Community continues to amaze us, their hearts are huge and their support of our family is endless.

News Story

Bethel Schools Superhero Day for Super Oliver(you don't need to sign up for flickr to view them, just click the X) The High School dressed up too, but their photos aren't on this link.

The past 2 weeks have been the longest of our lives. We've spent them holding Oliver and knowing that he may stop breathing at any moment. There have been a few times when he did stop breathing for about 20 seconds, we thought the worst, then he'd gasp and start breathing again. We stare at him, and flinch at the slightest noise or change in breathing. His breathing over the past 3 days has been even slower, sometimes as low as 5 breaths/min. Putting him down to bed each night is scary, we don't know what the night will bring. With a neurological illness like MLD everything is so hard to predict, including death. We sleep nearby, never quite asleep, always listening.

He remains very comfortable and is spending quality time with Mom, Dad and Thea. Still making each moment count.

Mom reads some new books. This one was called "Oliver's Game"

A photo canvas now hangs on the wall in the stairs to the basement(an early Mother's Day gift from Oliver and Thea)


No comments:

Post a Comment