Benzens white blood count went down again. This is not good because obviously we want it to go up, so he doesn't get an infection. But, it also limits Benzen's visitors until it comes back up. He has been off of the medicine for a couple days now and to me he seems a little more alert (not pictured above). His Biliruban has stayed the same for a while now, which is OK. It should start going down on its own now. He has been off of photo therapy for almost a week now. I don't think I knew the answer to this last time but, six weeks should be the longest he has to stay in the NICU. So, how ever many more doses they can get in, in the next 4 weeks will be all he gets.
It still is unreal everyday that I have to ask doctors how severe Benzen's mental capacity will be effected. It hurts inside every time I have to ask, and I ask everyday to see if I can get a real answer. This answer is always "its a waiting game." I am a huge Universe nut. It is mind blowing that we can land on the moon, prepare to land on Mars, or we can even see 10 billion light years away. But, we can't look at an MRI here on earth and get answers. Again we look to all the positive sign we know about mentioned in previous posts.
Amy told me about a couple of songs that she knew I would like. The one for tonight is by Matthew West called Strong enough. It reminded me that I am not alone in this. I have all of you and God. Becuse "I know I am not strong enough to be everything I am supposed to be." I don't have to be. I have my support team. I look at another one of my best friends (Billy Witt). He was in the Army and even fought for our freedom over seas. That's a guy strong enough. He fought for me to be able to sit safe and sound in a NICU room. I can't believe the courage and strength that would take. I appreciate what he and the rest of the forces have done and will do for all us everyday.
Happy Anniversary to my mom and dad 33 years!
Ben
Sorry for the bad formatting...Here's the Lyrics
You must
You must think I'm strong
To give me what I'm going through
Well, forgive me
Forgive me if I'm wrong
But this looks like more than I can do
On my own
I know I'm not strong enough to be
everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
For the both of us
Well, maybe
Maybe that's the point
To reach the point of giving up
Cause when I'm finally
Finally at rock bottom
Well, that's when I start looking up
And reaching out
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Cause I'm broken
Down to nothing
But I'm still holding on to the one thing
You are God
and you are strong
When I am weak
I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough
I can do all things
Through Christ who gives me strength
And I don't have to be
Strong enough
Strong enough
Oh, yeah
I know I'm not strong enough to be
Everything that I'm supposed to be
I give up
I'm not strong enough
Hands of mercy won't you cover me
Lord right now I'm asking you to be
Strong enough
Strong enough
Strong enough
Ben,
ReplyDeleteIn every dark cloud through our lives there is a silver linng. We have to practice patience and always have faith to see what or who it is. God has plans for us all. Not just anyone could be the parents of such an special young man as Benzen. You and Amy were given this special role. Ben you are an amazing young man and are touching so many lives with all your feelings and insight in sharing your journey. More silver linings to all the people that may think a little more about what is in front of them and how they look at things. Life is a journey that we can treasure and make the best of everyday the Lord gives us.....strength is found in places and people you never expect. Treasure them all <3
Prayers to your whole family!!
Heather Herr