A POETIC UPDATE

Well it has been just over two weeks since Noah was nearly lost, but take just one look at him today and you wouldn't know it. Shortly after what is now known as "the really bad day", Noah regressed, I would say substantially so. His muscle control and impulse control were greatly affected by the seizure. This was not unlike the massive seizure at Doernbechers. When he came home from the hospital in September we went through a similar stage of regression. Each time he has needed two weeks to regain muscular stability, and impulse control. He isn't back to his baseline yet, but he is close.

Next week we are going back to Doernbechers for an MRI just to look for any kind of peripheral damage and to make sure there hasn't been any further neurological impairments. We wont know the result until our meeting with Dr. Roberts on March 1st. We will make sure to update the blog then with the very latest. For what its worth though, Amy and I have not seen evidence outside of what I talked about above of any further damage.

The past few weeks have been incredibly difficult. As Amy discussed in the last post, our Fortress of Solitude was invaded by a thief of consciousness. An event like that shakes you to the core. It makes sleeping difficult, it makes moments of calm near impossible, it just adds such a great hesitancy to everything but it will pass. It has to right? I was telling Amy the other day, when you get a new car you always have the rule that nobody ever eats in the car. Eventually though, the kids are starving or you need something fast and you eat in the car and then that rule disappears. Eventually we will eat in the car, the calm will return, and we will be just that much more prepared to battle the thief.

I do want to send one more THANK YOU to all of the readers of this blog, our friends, family, and especially our neighbors who were there for us in a moment of crisis and care for us like a family, or maybe just like a community should. We could not have made it without each and every one of you. I will leave you today with a little poem I wrote for Noah (because I am sappy). I wish you all a great weekend and we will talk again soon.


I will burn down the house, to see the sun

I will slash the tires just so I can run

I will run before I walk

I will sign before I talk

I will sing a song before I know the words

And always dance to a song that is never heard.



Hold me Daddy until this storm passes

Lips of blue and a racing heart

Comfort me as I shake

I feel like I am breaking apart



I see halos of angels on everything around

Time moves slow as my mind slips out

When I come back I look for you, Momma and O

And there you are, holding me close

Forever strong



Son, I want you to know

I am here, never leaving

Together we will persevere

No one knows the why’s and when

But I want you to know I am there when they begin



I will burn down the house, to see the sun

I will slash the tires just so I can run

I will run before I walk

I will sign before I talk

I will sing a song before I know the words

And always dance to a song that is never heard


Best,
G