Wednesday, May 16, 2012


While we were staying in the hospital, the neurologist came into see us.
He stood at the foot of the hospital bed and we talked
 about other things that could be causing the seizures.
He told us he was testing Bradley's copper levels to see if he has a deficiency.
He said there is something about Bradley's hair that is making him think about copper levels.

 Near the end of our conversation I said "Who diagnoses CP?
Because Bradley's not holding up his head. He's not doing anything he should."

And the neurologist said "I do. And I will give you the diagnosis if it will get you help."

And I said "Yes, I think it could make our case more compelling."

And he said, "But I want you to know that we have LOTS of testing to do.
MRIs and EEGs to try and figure out what is causing these seizures. "

I told him I understood.
And I told him I was still pursuing a larger, unifying diagnosis.
And he said I needed to.

And when he walked out of the room, I realized Bradley had just been diagnosed with a huge thing.
And it made me a little sad for him.

And on Monday at Physical Therapy, the therapist said she felt like
Bradley had regressed a bit with his head control because of the hospitalization.
And I told her I noticed it too.

And after the session was over she was seeing us out to the door and I was sweating from fumbling between my giant purse, the ox tank and my 20lb child who is no where near sitting on my hip.
(yep, he's 20lbs now!)

And she said it was time to start thinking about a really nice stroller for Bradley.
And I told her we had been thinking about that too!
That we were going to go to Babies-R-Us to find a nice one this weekend!
And she said, "Well I'm not talking about a stroller you can buy in the community.
I'm talking about a stroller that is covered by insurance; that supports his head and trunk properly."
And she pointed to a stroller in the corner of the room that had a funny seat on it.
And she led me over to it.
And my eyes were darting all around it trying to
 figure out why she was talking to me about a stroller.
And I said "It has no belt!"

And she said it was their demo and that the man who sells them would come out
 and meet with us and measure Bradley for a perfect fit.
She showed me how the handle adjusted for any height to push it.
She pulled out the shade canopy.
She said you could detach the chair and put it at different heights
and set him on the floor with Charlotte
or set him higher so I could feed him with the tray.

And my mind suddenly caved and I started to cry.
And I apologized and asked her if everyone she showed these "strollers" to cried.
And she said, "Actually, they do!"
And she said that it was okay. That reality was setting in.
And she said, "This doesn't mean that he'll be in a chair forever!
It's just going to help make your life easier right now!"

And I walked out of there a little shaky and flustered.
And as I drove home I realized how sore my arms were and how much the "stroller" would help.

To me the diagnosis of CP still doesn't mean much.
And Bradley has had so many diagnosis, I'm starting to become numb to them.
Every time we leave a doctors office we get a paper with a little section titled "diagnosis"
and below that there is usually something I need to google, with a check mark next to it.
So many clinical diagnosis and yet so many normal test results.
And when you hold him in your arms, you feel his muscles,
yet you feel no help from him to hold himself.

And I'm starting to have a frustration in my voice when I talk about the unifying diagnosis.
I feel like such a broken record sometimes.

Bradley's earth stuff is some heavy stuff, isn't it?
Glad I know about the eternal stuff too.