My favorite "kisses" with Noah are nose rubs. I just can't get enough!
Jason and I met with the neurologist this morning for about an hour to get all of our ducks in a row for Tuesday's meeting...this is a very pivotal meeting. The reality is, because no one knows or can name a diagnosis for Noah, only a bad prognosis, seeking treatment at this point is exploratory or experimental. We will be the first parents at this hospital, and possibly anywhere, to ask for an umbilical cord stem cell transplant or cord blood transplant to be performed in the area of neurodegenerative disorders. I've always lived under the philosophy that it never hurts to ask. The worst that anyone can say is "no" and even then, well...Jason and I both feel that after doing the research we have done, if we don't pursue this for Noah, we haven't done everything we know to do. No, we don't know if it will help him or not, it's experimental, but there is no other treatment available and Noah is progressing. We know we are desperate. In asking for this procedure to be done on Noah, the hospital may do one of 3 things: approve it and somehow get our insurance to cover it; approve it and we pay out of pocket, or say they can't and won't do anything for Noah. Obviously #1 is ideal, but #2 is acceptable. Regarding number 3, hopefully we won't have to leave the country for care because doing so is putting Noah at risk with transport and everything, but Jason and I are willing to do it since we feel so strongly about the stem cell transplant.
Jason is one amazing man. I am really proud of him. God has laid several things on his heart regarding Tuesday's meeting, including how he'll phrase things, so as you pray, seek God's words to be spoken through Jason and God's will to prevail, no one's agenda, not politics, not even our own, but God's will.
Some reading at this point might say, "It's God's will to take Noah home...", well, He's had ample opportunity, and we've laid him at God's feet daily, yet Noah is still here. Then some would say, "Well, a machine is keeping him alive. You are "robbing" God of taking Noah to heaven...", somehow, the God who threw every star into place, formed the planets in His hands, has my name written on the palm of His hand and Who's glory is so brilliant we are unable to look upon it, somehow, I just believe He's bigger and that I can't possibly hold the power of "robbing" God of anything. I, like everyone else, don't know...but what I do know is God ROCKS and He's brought Noah into our lives for a purpose. I don't want to miss out on that purpose due to politics or personal opinions. There are parents all over the world in similar situations. I can't pretend I'd know what to do in their shoes when it's hard enough to know what to do in our own. All I do know is that Jesus' words regarding worry are so powerful. It's the first time in my life I've heeded and walked this verse..."Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34 One day at a time...