Prayer Request

What is life? It's not an emotion, you can't touch it but you can experience it.

Is there any one word that defines the capacity of experience?

You can't put a limit on experience. Nor can you put a limit on your life. I don't care if an experience lasts for only a few minutes, the initial feelings it brought to you, the thoughts that flooded your mind, and the influence it had on that moment and your life are endless.

Jacob's feeding site is breaking down again. My parents didn't tell me until I came home Wednesday and I'm grateful because if they told me while away at school I would've had a breakdown for sure. It's a weakness that I certainly have to work on….but anyways, it's leaking a significant amount. I knew something was wrong when I looked at the pictures my mom sent me of him at his "Feast Day" at school. He had the binder on which has been off since he had the nj tube placed. Once that was removed, he had the bolus feedings and it was still off. I was also on the phone with my mom and I overheard in the background my dad in anguish saying "it's wet, It's soaking wet!" But today confirmed my fears and put my doubts to rest.

Jacob is not only leaking again but he's losing weight. He recently went back to his specialist who changed his feedings completely to compensate for the loss of protein (they were having a lot of trouble keeping his protein levels up.) I think about 2 weeks ago, he went back in to see his surgeon and wound up having to have sutures placed again. They have never worked before so why would they work now? All of the progress made; the healing of his site; it's deteriorating. And since his site is getting bigger and not smaller, they have placed the nj tube back in. It's not a painless procedure might I add...

It's times like these where I think about the moments where I was lazy or complained too much. Not wanting to drive to get groceries or having a professor testing us on material we haven't learned; all small "problems" if you look at the big picture. But if I'm being totally honest, they are not problems at all. As long as I do my best and put my trust in God, he gets me through anything and everything so school really shouldn't be that stressful, because it always works out in the end. I guess a small part of me confesses these things in hopes that it would change the outcome/reality with my brother. But realistically, I know it won't.

So with all said, he's not doing so well. Things could be worse but things could definitely be better. It's been a sad day. And we don't know what to expect next. Any prayers would be greatly appreciated. I'm not sure what God's plan is here….this little boy's struggle seems endless.