Sunday, February 10, 2013

Boy On A Mission

 I'm trying to be positive and not let my grief overwhelm me.
Thank goodness I have plenty of work to keep me busy.
To keep my mind off the present.
I have always been a future thinker.
A planner.
I'm good at planning things.
Envisioning them too. 
And planning what and where we will all be in six months, always begs the question,
"Where will Bradley be?"
I understand that no one knows the future.
But when most 18 month old babies are learning to talk and form sentences
and I'm still waiting for my 18 month old to hold up his head, it's obvious the delay is huge.
But now, he's not only having delay, but regression too.
And you understand it clearly when you are around him and he sleeps all day.
I'm past the point of a diagnosis helping me to know the prognosis.
I know the prognosis. I feel it in my heart. And doctors are only confirming my thoughts.
We went to see Dr. Morris last Thursday.
She still does not know what disease Bradley has.
I told her about the retinitis pigmentosa, that the opthamologist saw in the last exam.
Dr. Morris was surprised.
And she said she will reconsider the syndromes that have retinitis pigmentosa,
to see if anything else that Bradley has is consistent with those.
I told her he was admitted to hospice because of his uncontrolled seizures.
And I asked her what she thought of that.
And she said, "No one knows. He could do anything."
And I said "I'm sure you have lots of Mothers of children,
whose health is failing who come to you in tears..."
And I felt the tears starting in the back of my eyes.
And she nodded and changed the subject so that she wouldn't have to feel our pain.
She started her exam.
She measured every inch of Bradley's body, like she did last time.
The spacing between his eyes and from his eyes to his nose folds.
The length of his hands and feet.
The length of his ears.
And they plotted the measurements on the growth chart.
And she said that his growth line is going down, from the last time she saw him.
Especially his hands and feet. That they appear to not be growing.
And she asked about his diet.
And we showed her a can of his food and she did the math in her head
and said he is getting sufficient nutrients.
And she said that seizures can affect the growth hormone levels.
And that if we could get a growth hormone level,
 from his blood,
she would be interested in seeing what it was.
She's sure it would be low.
And we talked about having whole genome sequencing done.
She said Nevada Medicaid does not cover the $5,000.00 test.
She said most insurances do not.
And I told her to go ahead and try to get a prior authorization.
That Bradley has been approved for things that he shouldn't have been before.
And her assistant said she would.
And I told her if they got me a cash price, I would try to round up the money too.
I told them money would not be a problem;
but getting blood out of his veins would be.
And they said they would go ahead with attempting to get the prior autorization then.
And she said she would present him at the world wide genetics conference in March,
if I would get together the last few test results.

And after two hours we left.
My head was so full of info and things to think about.
 I could be chasing so many things right now; trying to get Bradley diagnosed.
But I feel like the time with my dear son is running out.
I don't know if that's the most important thing for us right now.
I think someday, several years from now, Tom and I will move into a new neighborhood.
A new ward.
And our new friends will look at our three kids and say, "You have three kids?"
And Tom will say, "Yes these three, and we have a boy who is on a mission right now too."
And they will say, "Oh? Where is he serving?"

And Tom will say, "In Heaven."