So if you've followed us for awhile, you know that I don't claim anything as NEW behavior unless we've seen it 2 or 3 times as "intentional". Last week, I was carrying Braden inside, and when he had his head down on me, he raised his left arm backward by almost 90 degrees! The nurse Ebony also saw him do it - very exciting. Then the next day, I was telling the story to PCA Erica, who said that when we had him on his side in the crib the next morning - he did the same thing!!
So our bubba is doing something new, despite a downward decline in organ function. I feel like it's God's little way of showing us that we can NEVER give up on Braden, because only God is writing his story. Braden will not be status quo for a Leigh's patient, he will not be "typical" even for his disease, and his story is not over. I love my little fighter, and we cherish every day we are blessed to be his parents.
The next week God sent me 3 rainbows on the ceiling - in some ways saying to me that there is a rainbow after every storm, and the three of us will continue to be faithful in this journey together as a family.