Friday, September 19, 2014
Diagnosis Editon : Answers
Yesterday we had an appointment with Bear's physiatrist. We also went over the results of his brain M.R.I.
For so long we've gone the route of everything but the M.R.I. mostly because of my fear that my baby wouldn't wake from the sedation. Yet, we decided (even though I was ridiculously terrified) it was best, when Bear turned three to have it done to see if it could help identify or dispel a diagnosis.
We were told we probably wouldn't see anything, mostly because he was "full term" when he was born.
However, we did see something..... Plain as day. There it was. The scar tissue evident of a brain bleed which happened shortly before, during, or right after birth.
Bear has been diagnosed with Congenital Diplegia. Also known as Spastic Cerebral Palsy, or Little's Disease.
On one hand, it's a happy thing. It is what it is. It will not progress, it will not change. The brain damage is as it always will be. We have an official diagnosis. We can be done. There will always be specialists and most likely surgeries and appointments, but now we know. We have a name.
We have a name. We have a diagnosis. No more wondering. No more fear of something fatal. We have a name for the beast we have lived with for three years. Relief, we can breathe a sigh of it.
On the other hand, I'm angry. I AM MADDER THAN A BAT OUT OF HELL!
I AM MAD!
I am mad at my OB for stripping/sweeping my membranes during a standard prenatal appointment,
without my knowledge or consent and causing me to go into imminent labor potentially before my unborn child was ready.
I am mad that I was left stalled at 9.5 centimeters for over 5 hours during labor.
I am mad that my son had Torticollis in the womb, yet it went unnoticed and most likely ultimately caused a nerve to be pinched during our vaginal delivery.
I am mad that after a big bleed, the flu, my son's small size, and two prenatal specialists monitoring my son's kidneys and brain ventricles I was still not considered a high risk patient.
I am mad that I was unable to have an epidural because my white blood cell count pointed towards an infection during labor. An infection caused by a urinary tract infection.
A urinary tract infection that went unnoticed by my OB office even though I had to pee in a cup at every. single. appointment.
Apparently they can scan you for drug use, but not ensure you don't have a fucking U.T.I.
I am mad that my son came out 'sunny side up' and yet after 15 hours of horrific labor, no one but my husband thought to tell me!
I am mad as hell at the nurse who gave my newborn son his hearing test. You told me he failed the first time in his right ear, but passed the second try "with flying colors". I wish I could talk to you now and have you explain that to me, especially since at 3 years old my son is deaf, in his right ear.....
Must have been one hell of a flying color show, or close to break time?
I am mad that my spastic newborn with ridiculously tight muscles was hailed as advanced for his age, doing things (like crawling and lifting his head- which was really just spastic movements) and not evaluated at 4 days old. We were informed simply, not to leave him on a couch alone.
Thanks, that's some grade A advice, doc.
I am mad that what was most likely a seizure was laughed about and then explained as "Moro reflex".
Because first time mothers are idiots who don't know the difference between something being seriously wrong and your baby's 'startle reflex'.
I am mad that I was undermined so many times in the first year of my son's life.
I am mad at myself for being so scared of sedation. I am mad at myself for inadvertently causing our family prolonged emotional pain when we could have had answers 2 years ago had I agreed to do the M.R.I.
Most of all, I am mad that not a single thing will ever be done about any of the things I am mad about.
So, this, is where I am at right now. Maybe in a few days I'll be in a better more Zen, accepting place. But for now I am back in the thick of grief and that's okay.
To quote a fantastic book : "Pain demands to be felt."
Now if you'll excuse me I am going to continue to stare at these pictures of Bear in a swing because his facial expressions cause me great joy.
And make me laugh like a Hyena on cocaine.
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