Trying to remain a sense of “normal”

Here are some pictures of our sweet boy since we’ve been here at TCH.

And here’s what we’ve heard:
▪️“He looks better than every kid here, but is probably the sickest one on the floor.”
▪️“He has probably one of the top 3 worst echos I’ve seen in my career.”
▪️“After looking at his records, I would have said this has to be Blake’s brother.”
▪️“Blake is the scariest kid in our unit.”

There is a committed team of well over 25 experts from various disciplines scratching their heads with the same question we have. How can a boy that looks and functions so well, possibly be this sick?

We feel so fortunate that though Blake’s heart and lungs are struggling, he looks and seemingly feels good! We can’t and don’t want to imagine having a terribly ill child and witnessing their suffering or decline. However, because we are lucky enough to see a strong and “healthy” Blake, it’s difficult to justify some of the scary decisions we will be faced with in the upcoming weeks. Looking like he does makes this all really hard to comprehend. With any intervention or therapy, we’d hope the outcome provides better quality of life. The catch is that Blake’s quality of life now is pretty great – it’s just that he’s good, until he’s not. And there’s no guarantee he’d make it through another crisis like the ones we’ve experienced. That switch flips quick and unpredictably, and we’re right on the edge.

We are going to resist the hospital gown as long as possible to help us maintain our vision of good health and his sense of “normal.” We are incredibly thankful Blake is himself; smiley, loving, handsome, funny, energetic – he’s forever our perfect little guy.

Thank you for the love and prayers as we navigate this process. Your support provides us with a tremendous amount of strength.

#forevergrateful #forblake #teamblake