September 6, 2011
“Not CP” that’s the impression of the doctor at SFCV.
Not. C. P.
We’re still a little bit rocked by this simple statement.
When we accepted The Butterfly’s referral we believed we were dealing with cerebral palsy. The most likely diagnosis, the one offered up by three physicians here reviewing the medical reports, was Spastic Left Hemiplegia CP.
We were prepared for CP. Ready for what THAT would require. Best case, worse case, we were dug in.
Reports from her orphanage and the Chinese physicians in Guangdong were clear: Left lobe atrophy resulting in right side weakness, a foot drop, little to no language, IQ unknown and a high risk for seizures.
Physicians here, (three of them reading the same information), concurred.
She has Cerebral Palsy.
It was scary but again we considered the worst case scenario and we decided we could handle it... all of it...she was ours.
But now...Not CP is our new diagnosis.
Not CP and nothing else.
Final diagnosis unknown.
Just Not CP.
Which might lead us to possible elation...or devastation.
I want to stay positive but my worried mama thoughts keep going the way of progressive, degenerative white matter disease. A worst case condition that truly is worst case.
The thought is so terrifying I can’t stay with it for long.
But I can’t escape it either.
Daddy on the other hand is gifted with an ability to ignore ugliness. Like a yogi master he wills all thought to the positive, focusing exclusively on things like:
She IS talking. A lot. Not anything like what was described in her reports. (Perhaps it is recent, a result of moving to better care at SFCV. I guess that would not surprise me.)
Her right arm appears equally strong to her left. She may just be a lefty.
She is smart...and funny...completely, cognitively in tact.
So we are left with an intermittent foot drop, a small (but still on the charts) head circumference and an mri that shows brain atrophy.
That is all we know, that and
The possible good news, if we are so lucky, is tremendous, a miracle but the possible bad news makes me WANT her to have CP. I know that sounds crazy but the prospect of losing her makes CP seem almost desirable.
I have no control over this, I know. I just wish I did.
God help me I wish I did.
I've held on to this long enough, this is part of why the waiting feels so desperate this time around, it's so twisted up with worry.
I am asking for insight, encouragement and prayer.